The Amazing Ambrose

AMBROSE IS 4!!!!

2012-01-21T12:17:00.003-05:00

On January 19, 2012, Ambrose James Brown turned 4 years old amid much fanfare!

A friend and her sister created a facebook page encouraging people to send a birthday card to Ambrose. We received so many wonderful cards, including many handmade cards from children, which were our favorites. It was so heartwarming to receive such an outpouring of love, especially from people we don't even know. Ambrose touches everyone who knows of him! I am so grateful for him and honored and blessed to be his Mommy!

2012

2012-01-12T15:42:00.005-05:00

I had a wonderful time with Ambrose over my Christmas break from school. Ambrose's grandpa visited. He has been feeling pretty well, but we are still chasing his Potassium levels trying to find just the right dose. His last level was 3.3, low again. He is having some occasional unexplained desats. I suspect it may be his positional airway. He has a custom angled trach and it has been nearly 2 years since the design has been modified. It may be time as he has grown quite a bit. He is now 32.5" tall. He will be seeing his ENT dr, as well as several others at the end of January. The ENT dr will scope his trach and see if it is still fitting well.

Ambrose decided to ring in the new year by tumbling out of his tumbleform chair. (His first fall.) He has scholeosis and leans to the left. I never used a seatbelt in his tumbleform. I didn't think he could get out of it due to its contoured shape and his limited movement. Well, surprise. I had my back turned and heard a thud. There he was lying face down on the carpet. I think he just leaned more and more into his curve as he seemed to have fallen out the side. Fortunately, he did not get hurt. He had a surprised look on his face. I immediately scooped him up and covered him with kisses. He cried about 15 minutes later for a few minutes and that was all. I feel so bad and have been strapping him in ever since.
On January 2nd, he became older than Sweet Angel Sophia, who died 19 days shy of her 4th birthday. Ambrose will be 4 on January 19, 2012. Exciting and scary. I believe Sophia had been the 5th longest surviving child with Taybi-Linder Syndrome, so turning 4 is huge!

Merry Christmas 2011!

2011-12-25T21:49:00.000-05:00

More pics of my very patient boy

2011-12-09T00:17:00.001-05:00

My Gorgeous Boy

2011-12-09T00:04:00.002-05:00

Brosie is doing well.

One week after Potassium supplementation, his Potassium level only rose from 2.6 to 2.8. (normal is 3.5-5.0) They increased the dose and his level rose to 4.3 after one more week. Yeah! Now I am a little nervous about it continuing to rise this quickly and becoming too high, which is not a good thing either. I am pleased to report that he has been having only a couple of seizures a day the last week. (down from 8-10 a day) There is not supposed to be a connection between potassium and seizures, but it's quite a coincidence.

Ambrose's nurse Meghan was inspired to do a Christmas photo shoot and Amborse was a great (and very patient) model!

2011-11-23T15:47:00.003-05:00

About a month ago, we all took turns having colds. At first I though Ambrose was going to manage to avoid it. But, no matter how careful we were, he got sick too. Of course a cold can make Ambrose very sick. I am pleased to report that he got through it at home, without even a trip to the Doctors. I kept him on his CPAP and Pressure Support around the clock for a few days and he was much better. He's not quite back to his baseline O2 range and his secretions are still a bit yellowish, but he is back to his usual WONDERFUL self!

Yesterday we went to DHMC for a scheduled appointment. I asked about checking Electrolytes since Ambrose is on diuretics for his renal calcification. They hadn't been checked since August. About an hour after leaving I received a call that he had a critical lab value. His potassium level was 2.6. The normal range is 3.5-5.0. This can cause skeletal muscle weakness, constipation (which he has definately been experiencing) and can progress to affect the heart and lungs. It is good that it was discovered. Ambrose hid it well. He is now taking Potassium Chloride supplements and will have to go back next week to have his levels drawn again (from his trusty forehead vein).

Otherwise Ambrose has been his usual cuddly and sweet self.

We have been stimulating his vision a lot more lately with many of his Make a Wish toys, including the iPad. I think he is actually using his vision more. His doctor commented yesterday that she noticed him looking at her for the first time. Yeah Brosie!

Happy Halloween

2011-11-23T15:41:00.002-05:00

2011-10-10T19:55:00.002-04:00

Ambrose is doing much better now that he is off of the Banzel and Gabapentin. Far fewer seizures. He is still on his up all night kick however. I'm not liking it. It doesn't seem like he is getting as much sleep as he "should."

I removed another one of his teeth that was very loose, so he wouldn't swallow or aspirate it. Jimmy found his front tooth on the floor, so hopefully the other 2 unaccounted teeth were spit out as well. He now has one more loose tooth.

The weather has been beautiful and we have been out for walk everyday for the last 6 days.

Ambrose has been smiling more, but it is difficult to capture in a picture.

Med issues

2011-09-22T23:06:00.002-04:00

Ambrose has had for some issues the last couple of weeks.

A few months back, we saw his neurologist and had an EEG after Ambrose began having several couple second long seizures a day. The EEG showed a different type of seizures. The neurologist took him off of Tri-Leptal and started Gabapentin. His seizures just got longer. The dose of Gabapentin was increased and he became very very sleepy and had no improvement in his seizures. He was then started on a new med - Banzel, or rufinamide, and began weaning the dose of Gabapentin simultaneously. After 3 days on the Banzel, he started having crying spells. Ambrose rarely ever cries - maybe a few times a year. So when he cries, we know something is really bothering him, but we can only guess what it may be. He also became constipated, but resolving that did not resolve the crying spells. It is just heart breaking to see him cry. We found no mention in the drug guide or online about crying or irritability, but I did read about many people having bad experiences with it. It does cause headaches, which could have caused crying. Last Saturday he had 10 episodes of crying. Now he has weaned off of the Banzel and has had no crying, constipation, or seizures. Interestingly "seizures" is listed as a side effect of all seizure meds.

Unfortunately he is back on a sleep all day, up all night schedule.

Also, he has lost 2 more teeth and must have swallowed them. I fear him aspirating them.

He has been up and down on his O2, from 0.5-4L.

Ambrose and the iPad

2011-09-04T20:04:00.007-04:00

Ambrose seems to be interested in looking at the colorful graphic images on the iPad. Baby Screen has simple graphic patterns that move slowly. Several apps, such as Pixel Swarm, Fluidity, and Fun Fireworks respond to your touch. He does not touch it independently, but when I help him touch it, he seems to notice that it is coming from where his hand is. This might not seem like much, but Ambrose's vision is severely limited, so it is very exciting when he responds to any visual stimulus. Thank you to Small Dog Electronics of Waitsfield, VT!

The video is of Brosie (in lower left) watching his disco ball, while playing with his disco ball switch toy, and listening to one of his fun kids music CDs.

iPad

2011-08-21T20:43:00.004-04:00

Ambrose has been continuing to enjoy exploring all of his new sensory toys. It is wonderful to get to see him experience new sensations, even if his reaction is subtle.

We have finally gotten the last item from our Make a Wish: an iPad. It was generously donated by Small Dog Electronics of Waitsfield, VT. As you may have heard, iPads are becoming increasingly popular as an educational/sensory toy for babies and special needs children. There are many many apps designed especially for them. I wanted to try it but wasn't sure that he would respond, due to his limited vision, but it seems quite promising. He has just had a few interactions with it so far, but really seems to be looking at the fireworks, baby shapes graphic patterns, the rainbow xylaphone. Also, it has a feature called photo booth that allows you to take some pretty crazy pictures, as you can see.

Baptised

2011-08-07T19:09:00.005-04:00

Ambrose was baptised today at Dummerston Congregational Church! Sorry no picture of the baptism. This is a picture of Pastor Susanna with Ambrose, followed by some more pictures of him playing with some of his fabulous Make a Wish toys.

Make A Wish

2011-08-02T19:00:00.004-04:00

Ambrose was granted a wish by the Make A Wish Foundation of Vermont, who had previously granted a wish to Sophia as well. With Ambrose's significant visual and hearing impairments and limited mobility, it is difficult to find things that stimulate him. I have become pretty good at it, but many "special needs" toys are quite expensive! We have learned ove time that Ambrose likes vibration, colored lights, and music. I requested and was allowed to select a wide variety of sensory toys and equipment. It has been like Christmas in July as packages arrived every few days. It is very exciting for all of us to see if he responds to the new sensations.

Some things have been a big hit, such as the vibroacoustic beanbag chair, which we have covered with the tactile cover we had gotten for his birthday, which hooks up to a stereo and he is able to feel the music. I put the Vibramat under the front of it for extra vibration. He likes his giant crocodile, which he can lay on, the windchime, Pipe Dreams xylophone, Audobon birds, vibroacoustic wedge he can lay on, tray for his stander, tactile book and tray cover, frame for hanging toys over him when he is in his chair, light up maracas, aquarium lamp. I am very excited about the Wingbo tummy time swing. Ambrose doesn''t usually tolerate being in this position, which is so good for him. He doesn't seem to mind this since he can push with his feet and swing a bit. It does tire him out however to bear weight through his arms and hold his head up. We are still waiting for a few more goodies, including an iPad, and some switches and switch activated toys, and a projector that projects moving liquid swirls, like a lava lamp. I will post more photos of him with his new treasures.

If you ever feel the urge to donate to or get involved with a charity, please consider Make A Wish. Thank you to our wish granters Polly and Barbara, and the director of wish granting, Heather for all their hard work and kindness! I would like to be a wish granter one day!

Old Friends

2011-07-29T10:47:00.002-04:00

We recently had a visit from dear friends Carole and Jenny. We've been friends since 3rd grade! I haven't seen Jenn in 19 years as she lives in Washington state. She was in good 'ole NJ for a family wedding and drove up with Carole (5 hours each way!) to spend the afternoon with us. We had a wonderful time and of course Ambrose was the center of attention. He even got to enjoy a private bell concert! Thanks guys! Lots of love to you both!

My pot of gold

2011-07-20T22:07:00.002-04:00

Look at how straight Ambrose's legs are at rest. Wearing his knee immobilizers every night is really making a difference!

Ambrose is doing well and has been making some public appearances as well as going for many walks.

He just had a bunch of doctor's appointments. He hasn't been to DHMC in 3-4 months, then all of his follow up appointments became due. There were so many , including an EEG and renal ultrasound, that we needed to go twice in the last two weeks. He has renal calcification. Calcium is building up in his kidneys. This causes the level of calcium in his blood to be low. It could eventually affect his kidney function, but it is not at this point. He was put on 2 diuretics to help keep the calcium in his system, while preserving his potassium as well. We will need to increase his fluid intake to compensate for this. He has also gone up on his thyroid medication, started on sodium flouride, and replaced one seizure med (Tri-leptal) with another (Gabapentin) based on his EEG. We will have to go back in a month for some follow up blood work.

He has also been approved for a wish (for lots of sensory toys & equipment) from the Make A Wish foundation. It is very exciting! With his visual and hearing impairments and limited mobility, it is hard to find things that Ambrose will respond to. There are many fabulous special needs toys out there, many of which are quite expensive, so it is wonderful to have this opportunity for Ambrose. I will post more about this in a few days as some of the items have begun arriving. Yeah!

Ambrose loses his first tooth

2011-06-22T13:45:00.002-04:00

The other night, when I was brushing Ambrose's teeth, I noticed one of his bottom front teeth was extremely loose. So much so that I was worried about it falling out and him aspirating it. (Yikes!) I grasped the tiny tooth and it came right out. Thankfully, he didn't even seem upset.

He is not quite 3 1/2 yet. Teeth don't typically fall out until age 5 or 6. This happened to Sophia as well. I had noticed that one of her top teeth was loose and took her to the dentist. He thought she was very young for it, but the x ray showed the tooth had almost no root. He explained to me that the roots of baby teeth reabsorb allowing them to fall out. We kept an eye on her loose tooth for months and one day while checking it, one of the bottom front teeth, that I didn't even know was lose, fell right out. I believe it was the same tooth that Ambrose lost.

He is very protective of his mouth and doesn't like us brushing or even looking in his mouth, but I did investigate and found his top two front teeth also slightly loose. Oh boy!

Valentine

2011-06-16T21:04:00.002-04:00

My darling Angels put this ad in the paper on Valentine's Day. (They may have had a little help.) Isn't this wonderful?!!!!!

Brosie Good!

2011-06-16T20:25:00.002-04:00

Little Ambrose is enjoying lots of walks in the warm weather, and more than anything, LOTS of hugs! He has been staying out of trouble. (i.e. the hospital) He has started having some very brief seizure activity, which hopefully is just a result of him outgrowing his med doses as they have not been adjusted for a very long time. He has been growing a lot. He is up to 29 lbs. We actually decreased his calories a few months ago, under Dr advice, and since doing so he has gained 3 lbs. He only gets 550 calories a day. (Pediasure and lots of water.) I'm not sure if he has grown in length. That is a tricky thing to measure due to his very tight hamstrings, which cause him to keep his legs bent. The Dr. increased his Lamictal dose and scheduled an EEG for next month, at which time he will also be getting an ultrasound to follow up on his kidney stones vs. calcification, and see several other Drs. as well.

Tomorrow, Ambrose will celebrate his Mommy's graduation from nursing school. (soon to return for more torture) and then Daddy's day, and then Mommy & Daddy's 20th anniversary!

(I was 9 I think.)

2011-05-29T10:19:00.003-04:00

OK. Life has been crazy busy and I have neglected this blog. The Amazing Ambrose has been quite busy: playing, painting, working on stretching his very tight hamstrings, going for walks, and of course snuggling!

Ambrose has remained healthy. There have been a few random fevers and some days with a lot of secretions, but he has been feeling pretty good.

Brosie's wonderful nurse, Meghan, has facilitated his artistic expression by supplying the means for him to use his busy feet to paint.

I think the last one looks like an Angel with green wings.

I was born Awesome!

2011-04-13T19:43:00.000-04:00

Sophia is welcoming a dear friend to heaven. Eric Swanson

2011-03-26T20:21:00.003-04:00

Mortality is not the exception, but the rule. It affects the very young, and also those who have been lucky enough to enjoy long fruitful and fulfilling lives. It is also a very lucky day for a man to pass into the sweet by and by surrounded by those who love and care and whose presence will be sorely missed. Yet the next phase is just beginning for a gentle soul named Eric Swanson who I was lucky enough to call my friend. I know my daughter Sophia will be there to welcome him, as well as Eric's Parents, who he sorely missed. James C. BROWN, AMBROSE AND SOPHIA'S DADDY

Home Home Hurray!

2011-03-09T16:28:00.001-05:00

We were thrilled to bring beautiful Brosie home yesterday. It is all snuggles and huggles 24/7.

Ambrose is in the PICU.

2011-03-05T14:18:00.003-05:00

Well...about a week ago Ambrose had a large amount of coffee grounds out of his g-tube, coinciding with diarrhea and fevers. After several phone consults with his GI Dr. and lots of pedialyte, we brought him in, following a spell of vomiting. His abdomen was quite distended and he was admitted to the hospital for further studies. His x-ray showed very distended loops of bowel. They did an ultrasound, which showed no obvious blockage, but raised concerns of possible kidney stones. He got an IV, after 3 different people tried poking him.

He had a lower GI barium study the next day. I got to watch it. It took an unusually long time for the barium to leave his stomach, but then it did pass through his intestines unobstructed. It also showed a hiatal hernia above his fundoplication that the barium refluxed into, but did not go up into the esophagus.

A urologist viewed the ultrasound and felt that he does not have kidney stones, but has renal calcification (pre-kidney stones). We will follow up with him as an outpatient.

We restarted feedings yesterday and are working back up to full feeds slowly. So far he is tolerating them OK. We are waiting for his GI Dr to scope his stomach on Monday, so we can hopefully discover the source of his frequent coffee grounds and the delayed emptying. They started him on erythromycin to increase gastric motility. He seems to feel pretty well most of the time, but has periods of distress with coughing and blotchiness, in which he needs to go up on his O2. His lungs sound pretty good though. Hopefully he will not catch anything while he is here.

By the way: it has been over a year (plus 2 weeks) since he was last hospitalized. I was very exicited to reach that milestone and was thinking of posting that but didn't want to jinx him.

AMBROSE

2011-02-27T21:00:00.003-05:00

Ambrose's Daddy spent all day carving this giant "AMBROSE" into the snow bank.

We are obsessed with our little darling.

When Ambrose turned 3, it was time to say goodbye to FIT and our wonderful early interventionist, Mary and hello to Ambrose's new team from Essential Early Education. (bottom 2 photos.)

Top is Ambrose multitasking on his tactile beanbag chair (or nest) that we got him for his birthday.

Blueberry Eyes

2011-02-23T22:32:00.000-05:00

Ambrose wins the 1st annual Brosieolympics

2011-01-21T14:24:00.002-05:00

Ambrose has been excelling at winter sports, as evidenced by his gold medal win in the first annual Brosieolympics held recently in our backyard.

Ambrose won in the ski jump (slide) competition. The crowd of plastic figurines filled the stadium and cheered him on.

Ambrose turned 3 on January 19th!

2011-01-21T14:13:00.003-05:00

Here are some pics from Ambrose's historic third birthday party. It was a modest party with Mommy, Daddy, cat Lucy, nurse Meghan, EI Mary, and many stuffed animal friends. Ambrose conked out pretty early on from all the excitement.

Merry Christmas 2010!

2010-12-29T22:22:00.000-05:00

Legs and Lights

2010-12-08T18:19:00.005-05:00

I was just reading back over the small number of post I have made this fall and they all seem to focus on fevers and illness. Sorry about that. He has been well a lot too.

Of course he has been up to his usual trick of staying up all night.

The most exiting thing is that he has been SMILING a lot more. His smiles are small and hard to capture in pictures, but we are seeing them and that is wonderful!

He got new KAFOs (knee-ankle-foot orthotics) which can be worn over the AFOs or alone. These replace his old velcro knee immobilizers, which weren't working too well. The problem is his incredibly tight hamstrings, or "hamsprings" as his EI recently dubbed them. His keeps his legs bent at a 90+ degree (why is there no degree sign on a keyboard?) angle. He wears these for an hour at a time for stretching. These new ones have a hinge at the knee which enables you to put them on his bent legs and gradually tighten them. We only go as far as is comfortable and hopefully will eventually be able to get them to loosen up. I have posted a picture of him getting cast for them a few months ago (while wearing his AFOs - notice how bent his free leg is) , and wearing them recently.

Brosie has been enjoying playing under the Christmas lights. He really seems to be seeing and enjoying them. I hope so! Tonight we put up the Christmas tree.

Happy Thanksgiving!

2010-11-28T16:20:00.002-05:00

Little Ambrose was sick again a couple of weeks ago. He had fevers up to 104.5. He started another course of Bactrim, complicated by a pharmacy error causing him to get too big of a dose, which resulted in some bleeding in his stomach. GRRRRRRRR!!! A couple of days later he was wheezing and very uncomfortable. He was put on a 5 day course of steroids. Within 12 hrs he was doing so much better. Again he was able to recouperate at home. Yeah!

I have enjoyed a week off of school in which I got to spend much more time with Brosie and we all enjoyed a wonderful visit from our dear friend Lisa. She drove many hours to cuddle Ambrose. As you can see, he has had a haircut since his cheeseburger pics.

I hope you have had the pleasure of watching the videos in the previous post. If not, you must do it now.

Wonderful videos of Brosie at play

2010-11-25T13:22:00.002-05:00

Please note the yellow submarine jamies.

Tom's Diner Part 2, 11/24/10

2010-11-25T13:21:00.001-05:00

Hey I just noticed we are now at well over 10,000 hits. Yeah! Thanks everyone for your interest in my darling boy!

Cheeseburger in Paradise

2010-11-05T12:43:00.001-04:00

Ambrose dressed as a cheeseburger for Halloween. I cannot take credit for making the costume, it is from Old Navy.

Wow! November already!

2010-11-05T12:15:00.002-04:00

I cannot believe I didn't make a single post in all of October. Pathetic! Yes, I am very busy, but that is unacceptable!

My darling Ambrose is doing well. He is up to his old tricks of staying up all night, being cuddly, looking cute, a kicking like a madman. He is using his hands a bit more.

One exciting things is that I was contacted by a recent graduate of Dartmouth Medical School. She met Ambrose and I last year while she was working with Ambrose's neurologist. She is now writing a paper about Taybi-Linder syndrome, focusing on the neuroogical aspects. It will include a case study of Sophia and Ambrose. I am very excited as NO ONE has been doing anything about this syndrome. It is so unknown and it seems that no one is interested since the geneticist who it is named for retired many years ago. She asked me for pictures and I have sent several that show their unique features but also show them to be human and special and not just clinical case studies. I hope that comes across some how in this paper.

I still can't figure out how to get more that 5 pictures to post, so I will add another post.

At last...a new post!

2010-09-30T14:12:00.005-04:00

Well....Brosie had appeared to be getting better after that last post but spiked high fevers (104.5) again, had a bad rash around his trach (from the antibiotics), and increased O2 needs. He went back on the vent and started Amoxicillin. I took a trach culture and the doctor took a culture from around his trach. Both grew the dreaded MRSA (antibiotic resistant infection) and the trach also grew Hemophilus influenza. He switched to Bactrim for another 10 days.

I was very stressed, thinking that perhaps I brought this home to him from work. I went to the doctor, as I had a bad cough for weeks. I got tested for MRSA and do not have it. I was very glad that I did not give it to him. I suspect he got it on his last hospital admission. He has gotten hospital acquired infections there before: the Norwalk virus, when in the Intensive Care Nursery, and C-Diff, when in the PICU. Sophia got urosepsis in the PICU. She nearly died.

The good news is that he finally seems better!

Isn't this the greatest picture!

It is hard being away from Ambrose so much now that I am in nursing school and working. Fortunately we have found another excellent nurse at last! Ambrose is loved and adored by his nurses: Cheryl, Cynthia, and Rebbecca and we are very thankful for them!

Much Better!

2010-09-05T21:30:00.002-04:00

Ambrose has been on the trach collar (OFF the vent!) for 12 hours and doing great! (About to go back on for the night. I guess we're back to night use only. Horray!) He's still up on his O2 but will take a while to get back down. Just finished his last dose of Cipro.

My little sick boy

2010-08-31T20:21:00.003-04:00

Poor Brosie has been sick for weeks. He has had fevers coming and going for the last 16 days (as high as 104.5 degrees) and increased secretions. Then, a week in, as he was seeming to be feeling better, the nursing agency sent us a pediatric nurse with 20 years experience. After one day of training the agency insisted she didn't need any more training because she was so knowledgeable. Despite the fact that she had observed a feeding and learned that Ambrose's g-tube bolus feedings need to go in over at least 20 minutes, she dumped the entire feeding in in about a minute flat and took in upon herself to flush it with a quantity of water almost as large as his feeding, clamped off and removed the G-tube extension, before I even knew she had started feeding him. He immediately started vomiting forcefully and had prolonged desaturations into the 70s while he choked and gagged. That evening his fever spiked and he began needing more O2. (I didn't even mention the sloppy, unsanitary suction technique she attempted to use, suctioning him too deeply, and putting his trach ties on dangerously loosely. Needless to say, she will never be setting foot in my house again!)

Now he has had 5 days of Cipro (following 7 days of Omnicef) and has been on the vent around the clock for the last 5 days, with increased PEEP. (If we didn't have the vent at home he would be in the PICU for sure.)

Meanwhile I have gotten sick myself after being run down from staying up suctioning Brosie night after night and worry that I then exposed him to a new illness, started nursing school last week, and am down a nurse. Stress!

Please get well soon Brosie!

Fun in the Yard

2010-08-14T19:56:00.002-04:00

These are some recent pics of some summer night fun in the yard.

Ambrose has been doing very well. A few weeks ago I was afraid he was getting sick. The fevers and increased secretions he was experiencing seem to go hand in hand with the 3 molars he has coming in. He still has some crying spells which break my heart. Ambrose hardly ever cries, but he can. Which just goes to show that he is generally a VERY HAPPY BOY!

Brose Videos

2010-08-14T19:37:00.005-04:00

Here's a glimpse of Ambrose's recent activities. The second 2 feature him playing with 2 special toys that were recently passed along to him from the Momny of a special little Angel friend of Sophia's named Talia. The second one is a switch activated bell carousel, which I believe is actually loud enough for him to hear without his hearing aids. I was very excited to receive this as I had actually selected this as one of the toys I got from Make a Wish for Sophia's sensory room, but I had passed it along to someone else. Unfortunately the video cuts off before he reactivates the toy himself.

2010-08-01T11:05:00.000-04:00

2010-07-17T20:39:00.002-04:00

I don't take Ambrose out very much as I worry about exposing him to germs. Summer is his big chance to get out. We've remained cooped up too much lately due to the intense heat and humidity. I finally took Ambrose out for a walk today and we got caught in a downpour. I didn't mind but it sure did surprise Brosie.

The last time he'd been out anywhere was July 4th, when he got to go to a barbeque and parade. I've been meaning to post these pictures earlier.

Ball Pool

2010-07-04T22:05:00.002-04:00

Well we finally got the rest of our stuff out of storage since our move last fall. This is the ball pool that was part of Sophia's Make a Wish sensory room. It is currently living in the middle of our living room floor along with the slide ( the only way to make a proper entrance into the ball pool of course.)

Ambrose holding Sophia

2010-06-30T16:32:00.002-04:00

This wonderful photo was taken by Ambrose (and Sophia's) nurse Rebbecca. This is Ambrose's lovely little hand holding "the Sophia necklace." It is my special necklace that contains some of Sophia's ashes. I only take it off when I shower and then Brosie holds it for me. The rest of the time I wear her right over my heart.

Father's Day

2010-06-20T18:07:00.001-04:00

O2 break

2010-06-16T23:39:00.002-04:00

This afternoon while Brosie was napping I tried taking off his oxygen as he was satting 100 on just a whiff of O2. He satted 93-96 for 45 minutes. This is quite remarkable as he is totally O2 dependent. When he woke up he needed to go back on.

Scrabble

2010-06-07T16:47:00.003-04:00

Yesterday, James and I played Scrabble. Despite the fact that he was leading me by over 100 points, I instantly won the game by spelling the magic word: "Ambrose."

Crappity Crap Crap

2010-06-04T11:28:00.002-04:00

We are facing the possibility of losing our nurses. Which can't happen.

When Sophia was with us we had nurses who worked through an agency.

That agency then announced that they might go out of business. Instead, they

were purchased by another agency which supposedly specializes in serving

high tech pediatric clients. After Ambrose was born, the discharge coordinator

from the NICU tried to arrange for him to get home nursing through this agency.

They would not take him on as a client because they apparently had people on waiting

lists. THe head of Medicaid spoke to them on our behalf. They strung us along for a

while, then said no. Rebbecca, one of Sophia's nurses went to the agency and said, "hire

me to take care of Ambrose." They made her jump through a bunch of hoops, then

told her they would hire her but they still weren't taking Ambrose.

Eventually we were directed toward the family managed high tech nursing program.

There are 5 families in the state that use this program. You have to recruit and train

your own nurses. They become Medicaid providers and are paid directly. This has

worked out fine for us until last week. I received a letter stating that the Dept. of Labor has

determined (after investingating a lawsuit a nurse brought against a family) that the nurses do not meet their criteria of "independent contractor" which they were being treated as. They determined that the family is considered the employer, not the state, and are required to provide unemployment and workers compensation .

insurance for the nurses. We have until July 1.

If he was served by a nursing agency, as he should be, this would not be our responsibility.

I cannot lose my nurses or I could not work or go to school. Nor can I afford to pay for this. (We don't have figures yet as we are waiting to get specific payroll info.) Also, the nurses don't want to lose their jobs! They love Brosie and are very dedicated to him and us.

The Medicaid guy is trying to compel the agency to hire my nurses to take care of Ambrose.

He thinks things may be different now with them as they finally have a new pediatric case

manager. In a way this would be an ideal solution but it would probably mean lower saleries for the nurses which is not good. Also, a week has gone by and they are still "playing phone tag."

The clock is ticking!

Our Children with Special Health Needs case manager is trying to help find out the insurance

costs and if there is any fund to help pay for this but she doesn't seem very optimistic about being able to cover it all.

Crap!

I was going to post this a week ago but wanted to give my post about my dear friend Ben some time.

Sophia and Ambrose's friend Ben passed away today, age 8.

2010-05-29T12:43:00.003-04:00

This morning Benjamin McKay Orton passed away in his bed with his mommy. He was 8 years 1 month and 25 days old. Please visit the link to his blog to read about this special boy. He had severe microcephaly.

I first met Ben and his Mom Becky during Sophia's first stay in the PICU. Ben was 15 months old and Sophia was 5 months old. We often wound up there at the same time. Shortly thereafter Ben got his tracheostomy. Unbeknownst to me at the time Sophia would follow in his footsteps a week or two later. The PICU attending, who knew we were friends, referred to Ben as Sophia's boyfriend."

I never got to know Becky all that well but we shared some bonding experiences in the PICU, worrying about our very special children. I was always amazed by her strength. She has 3 other children and always seemed to find time for everyone and to include Ben in everything. Please keep his family in your prayers.

Jimmy (Ambrose's Daddy) said Ben and Sophia are running to each other, hugging and spinning around. I love to picture them doing things they could not do in life.

Tactile things Part 2

2010-05-22T15:10:00.004-04:00

If you haven't already ready read part 1 of this post please scroll down to read first. Thanks.

Here I have pictured one of the few things I have made specifically for Ambrose as he has all of Sophia's things to play with. That picture is from his first birthday and I made him a sun with 12 rays, one for each year of his life. Unfortunately he does not use his arms and hands as much as Sophia. He is all about the legs. He does touch and bat at things but doesn't open his hands very much and definately is a lefty. I am trying to teach him how useful those hands can be.

Also pictured is Sophia in her "sensory dress." (She only wore it a couple of times.)

Sophia and Daddy with one of the "Discovery Quilts", the first items I made to sell.

Sophia on her Throne, and throne in progress. Made from tri-wall cardboard by a couple of members of Sophia's educational team and myself at the Perkin's School for the Blind's adaptive equipment workshop. This was really amazing because it was custom made to her proportions so she could actually bend her knees over the edge of the seat and rest her arms on the arm rests. This had never been possible before due to her short arms and legs. Hurray! Unfortunately Ambrose can not sit in it as it is too upright for him. His hips and hamstrings are so tight so he is more limited in his seating options.

If you haven't seen it already please watch the Wiggle It video before it drops off the bottom of the page. Or you can find it in the archive menu: title: Wiggle It, date: Friday, March 12, 2010

It's his best video yet!

Tactile things Part 1

2010-05-22T14:19:00.005-04:00

I began making tactile play things for Sophia when she was very little. With little if any vision and limited hearing and mobility most commercially available infant toys did little for her. In her case her hands were her eyes. She didn't have fine motor skills but liked to touch things. And with short arms that she didn't bring to midline it was hard for her to be able to reach things on her own as well. The creative skills I honed during my four years at Moore College of Art helped me to design numerous items over the years. I first made a cloth book with crazy trims all over it. Eventually when I learned to knit, taught by a doctor in the PICU, I made balls with highly tactile yarns and jingle bells inside and eventually a "sensory dress" I hoped she would be able to touch and explore while she was wearing it. I made a board to fit over her tray table that I glued all kinds of interesting feeling objects that I had been collecting for just this purpose. I also made a patchwork fabric tray mat to fit over her stroller tray. I got lots of positive feedback on these items from all of the specialists that worked with Sophia. I made a series of "discovery quilts" and tray mats made of black, white, and red (the easiest to see colors for infants and visually impaired individuals) highly tactile fabrics and sold them at the Perkins School for the Blind annual conference for parents of preschool aged children. I eventually started a website called sensoryplaythings.com. Unfortunately people rarely stumbled upon it in the vast world of cyber space. I did make occasional sales and got positive feedback. I took the site down with the intention of redoing it quite a while ago but that never happened. Last year I submitted my traymat design to the Abilitations catalog. They are the largest catalog of special needs equipment and are known to produce items designed by special needs parents occasionally. They did a year of product testing with developmental specialists. They will make them and give me royalties on sales and I am still allowed to make and sell my own if I want. They just came out in their April catalog. I must say I'm disappointed. They don't look as well made, don't have as many different fabrics, and are not shown attached to a tray or being played with, so unless you stop and read the description you probably have no idea what they are supposed to be. Additionally they are shown at the same angle and are similar shape to a tank top/vest on the facing page. Oh well. We'll see if anything comes of it. I don't have time to be making them right now anyway, but they could have done a much better job.

I will post another entry showing more of the items I've made.

Boo Boo Legs

2010-05-22T14:05:00.005-04:00

Little Brosie had 3 vaccinations (Hib, PCV, and Dtap) yesterday and is experiencing fevers and hives. Poor little guy!

Nice blue camoflage bandaids, huh? His Daddy said we wouldn't be able to find him in the blue forest.

He was also up most of the night coughing but I don't see how that could be related to the vaccines.

He is now 29 1/2 inches tall, which is as tall as Sophia got, and 23 1/4 lbs. He is the size of an average one year old. He is 28 months old.

2010-05-15T12:39:00.003-04:00

Ambrose is doing great. He has been spending all day (13-14 hours) off the vent. I just hook him up to it when I put him in bed for the night.

About a week ago he spit up 15 times between 3 am and 6 am. (He is on a feeding pump over night.) Then he was fine. It happened about 6 weeks ago too. He had a Nissen Fundoplication when he was about 9 weeks old. This surgery wraps the top of the stomach around the bottom of the esophogus to make it a one way valve so food can go down but not come back up. He had severe reflux prior to this and could barely keep any thing down. About a year ago he started being able to spit up and generally does it a couple of times a day. They checked it by upper GI when he was hospitalized in Feb. It was still intact but may have loosened up a little.

Sophia also had this surgery but not until she was 1 1/2. Prior to it she had 3 life threatening (8 weeks in PICU on vent) pneumonias. After she was much healthier. I really think it saved her life, which is why we got it so early with Ambrose. Hers also loosened up and she did seem to aspirate her spit up and got sick. We had to admit her to a different hospital as our usual hospital had no room available. Their solution was to put in a G-J tube in place of her G-tube.

In this case there are two ports inside- one that goes to the stomach and one into the small intestines. Medicines and anything that isn't a thin liquid have to be put into the stomach. What goes into the small intestine cannot make it back up. The problems are that it has to be placed in interventional radiology using fluroscopy. It cannot be changed at home. The tube is very narrow as there are 2 openings in the same diameter that used to have just one and it clogs very easily. We were constantly struggling with trying to unclog it. Believe it or not you use Coke to do this. Also she steadily lost weight as you cannot absorb as much of your nutrients in the small intestine. Fortunately she had extra reserve from steroids and thyroid issues.

Wow. I didn't intend to write a big thing about that. Hope you learned something.

I will post more cutie-pie pictures soon.

Thanks for reading and have a great day!

Brosie is my Hero!

2010-05-08T18:54:00.002-04:00

Brosie is up to spending about 11 hours a day off the vent. Hooray Brosie! He is my hero!

Pretty soon it'll be just over night! He doesn't seem to notice the difference.

My sweet baby boy!

Weaning!

2010-04-24T15:51:00.002-04:00

My darling boy has been weaning from the vent for a few weeks now. He went from a PEEP of 8 (CPAP) to 5 and off of pressure support during the day and back on at night. Then about a week and a half ago, I was inspired by the beautiful weather and I started taking him off of the vent (and onto the trach collar) for a few hours at a time. He's doing fine with it. He has gone for several walks and sitting on the deck with Mommy and Daddy. He's currently spending about 6 hours off of the vent per day. I think he would be fine with being off compeletely, but I want to go slowly and use it preventatively to try to keep his lung open and healthy.

He gave me 5 heavenly nights of sleep in a row a few weeks ago but has been back to his up all night schedule. I was just learning in my A & P class that the hypothalmus regulates our sleep-wake cycles. Perhaps that is a factor as well as his blindness.

Everyday I try to celebrate the joy that is Ambrose! I feel so blessed to have him on loan to me from Heaven. I am so proud of him and in awe of him. But sometimes it is hard not to be painfully aware of all the things that he will never be able to do, that we will not be able to share with him. And of course I am constantly aware of his mortality. I want him to stay with us forever!

Before and After Mommy Cut My Hair

2010-04-13T14:16:00.001-04:00

2010-04-06T17:18:00.001-04:00

Update

2010-03-28T15:45:00.003-04:00

4. That is the number of nights Ambrose has slept through in the 6 weeks since he has been home from the hospital.

He continued having lots of secretions which were finally staring to slow down a couple of weeks ago.

About 10 days after coming home he had some fevers and went back on antibiotics. His poor little hiney is still trying to recover.

He was having positional-related desats a few times a day due to his (non custom) trach. We finally received the custom Bivona and it has made a huge difference: no desats or air leaks (which also means no sound.) It is also easier to get in and out and did not cause any bleeding. It did however, cause another increase in his secretions. Hopefully he will adjust to this soon so I will not need to keep waking up to suction him as he lays awake all night.

He has been needing less O2, often as low as .25 L. We hope t0 start weening him from the vent soon and only using it at night. That will make it much easier to take him out for walks to enjoy the upcoming Spring.

Ambrose is his usual wonderful adorable sweet self.

If you haven't already seen it, please check out his "Wiggle It" video in the previous post. It will make you smile!

Wiggle It!

2010-03-12T00:42:00.003-05:00

Watch video and note the light radiating off of my darling boy!

Doing Great at Home

2010-02-21T12:03:00.002-05:00

Just a little update.

Darling Brosie has been doing very well since being home. He continues to be down on his O2 needs. He is active and playful and back to his usual tricks of partying all night, much to my dismay.

HOME at last!

2010-02-16T17:04:00.001-05:00

I am writing this from home sweet home with a snoozing Ambrose on my lap.

Since we left the hospital he is down on his O2 need and down on his pressure support.

He must be happy to be home!

Hard day for Daddy

2010-02-14T20:04:00.004-05:00

Brosie' home ventilator: The Pulmonetics 1150

Crazy days-

Yesterday Ambrose's Daddy got in a car accident. He was banged up quite a bit but lucky to have not been injured seriously. His truck however is totaled.

Ambrose is doing better and on track for his planned homecoming on Tuesday.

He is adjusting to his ventilator. I think he was having some plugging issues. No one ever listens to me when I tell them that he needs higher than normal temperature settings on his humidification. They wait until he starts to dry out and have troubles. The pulmonologist was in agreement with me on that and since it has been turned up, his secretions have thinned and he has stopped having desats. He has also come down some on his O2. I have learned that the frequency and size of his breath changes the amount of O2 his is receiving.

I also wanted to mention that he has his flexion/extension CT scan a few days ago. As predicted, it showed a very abnormal C-spine with narrowing at the base of the skull, but they felt it did no look unstable. Interestingly it also revealed that he has an ear infection. (10 days of fevers, multiple labs, negative for everything and no one looked in his ears.)

On a happy note: Ambrose's Mommy received an acceptance letter from Vermont Technical College for their nursing program.

What's wrong Brosie?

2010-02-12T22:26:00.002-05:00

Not sure what is going on but Ambrose is again having a difficult day.

He has been on his home vent since Thurs afternoon. Seemed to adjust to it just fine.

Then he started needing more O2 (up to 4L from 1L) to keep his sats up and was quite agitated. He sounds pretty clear. They took an Xray and it looked pretty much the same. Scoped his trach - looks fine. He had a low grade fever. Got some Tylenol and settled down but continued needing more O2. They also increased his pressure support from 5 to 8. They are not sure what the problem is and say it may be just him adjusting to the different vent but I'm not sure I buy that.

Mommy's Little Spark Plug

2010-02-11T12:21:00.001-05:00

GRRR!

2010-02-10T19:24:00.003-05:00

...Well that did not go so well. I had to fight to get heard by a Dr. who seemed annoyed by my questions. He put in a cuffed trach which is 2 whole sizes bigger than his regular uncuffed trach. I fought back tears as it caused him to bleed. I do not want to have to do this to him myself and on a weekly basis. (also it can possible harm his trachea, is uncomfortable to him, is torturous to put in, and seems to take away his voice.) They are assuming that he will continue to need a cuffed trach although he did not have one before, he has an acute illness and he is getting better. No one has really explained to me the reason for this assumption. I have been aware that he could potentially need one if he were to use pressure support at home. But he is not on pressure support. So perhaps he will not need it for long but they did not seem to want to explore what the options would be even though he would likely require a custom trach which takes weeks to order.

Also the Dr. who wants to manage his home vent usage has not been communicating with me. The other Dr. who was willing to do so has been checking in on us frequently.

The medical supply co. respiratory therapist worked hard to get a vent available to us quickly and it will be brought here sometime tomorrow for him to get used to and me to get training on. Unfortunately we can not go home until Tuesday as that is when she is available to come set it up in our home, train us and the local branch's resp. therapist. I don't think he really needs to be here that long but I am glad we actually have an end point in sight. Being here is a huge upheaval to all of our lives. I want to get him out of here before he picks up any hospital bugs.

2010-02-10T16:11:00.002-05:00

It's 4:15 pm. I had trouble sleeping thinking of ?s I wanted to ask the ENT Dr. who was supposed to come yesterday. I came in at 8:00 a.m. because I didn't want to miss him. I am still waiting.

The most annoying thing is I he was in the PICU several hours ago to see another patient.

Gotta go. He's here.

2010-02-10T16:05:00.002-05:00

I was told it was time to post some pictures.

Top is Brosie's friend and EI Mary visiting.

Then a ticked off AMBROSE ALMIGHTY

Bottom is the dry erase board in his hospital room with my words and a diagram his resident drew to explain his bicarb level increasing to counteract his elevated CO2.

2010-02-09T16:30:00.002-05:00

Today has been a bit frustrating although Ambrose is doing well, Thankfully!

I have been persuing getting a home ventilator for Ambrose since we have been here. It was brought up in the past when he needed CPAP but we wound up opting for getting CPAP through a different system. He weaned off of it but we continued to use it at night preventatively. When he was sick we used it all of the time. One of the problems is that it is not portable. I didn't want to take him off of it to go to the Dr. Also, it is not actually delivering the amount of PEEP it is supposed to because we do not have the high flow it needs to work properly. Additionally with the occasional episodes that he has had where he required some bagging, I feel that the ability to give him some pressure support would be a good thing. It seems that everyone was in agreement about it and I was trying to prevent his discharge from being held up because no one initiated the process of ordering this equipment and arranging for training me, etc. I've been asking about it for a full week. Today, after really pushing it has only just now been ordered. I'm told it can take a week unless they actually had one in stock, which I won't know until tomorrow. So frustrated! We need to get home and he is doing much better.

An additional issue that needs to be figured out is his trach. His anatomy is so unusual that standard trach tubes often don't sit right in his trachea and can occlude causing him distress. The reason is not always apparent to those around him who wind up giving him additional support that he may not need when the problem may be simply: airway.

He has been using a custom trach that is longer and has a sharper curve than usual. The ventilator has a problem with the air leak around that trach, so he needed to have a cuffed trach put in. It is hard to get in and causes bleeding. The cuff is inflated so there is no air leak, allowing the ventilator to work more efficiently. Of course, it is not custom made for him, so there are issues as mentioned previously. One being that he seems to need an unusually high amount of air in the cuff. There have been a few times he has seemed to be gasping through his mouth which shouldn't happen when you have a trach. The solution had been to go up to a bigger size. Now they are talking about a bigger size yet. I'm not sure if he is going to need this for home. I really don't want to have to force a large cuffed trach into him, causing him to bleed. They ordered a custom cuffed trach but it takes weeks to get and they've changed size since then anyway. I'm waiting for the ENT Dr to come scope his trach again. Of course he is looking through it when he is in a perfect position, not necessarily how it looks as he is moving throughout his day.

Right now he is off on an expedition to get a flexion/extension CT scan to look at his C-spine.

Freak fever

2010-02-08T23:50:00.002-05:00

I had to run home today. When I left Ambrose was looking good. Then I got a call that he had a 102.5 fever. They took a new set of cultures and switched antibiotics. When I returned he was once again looking good. No more fevers. What was that all about?

Ambrose had a very good day!

2010-02-07T23:08:00.002-05:00

Today darling Ambrose came off pressure support and didn't even seem to notice. He's been back down to 35% on his O2 and alert and playful all day. Daddy and Grandma and Grandpa came to visit. He had one episode that needed some bagging but it seems to be related to coughing, secretions, and trach position.

Keep up the good work Brosie!

7 in Heaven

2010-02-07T12:11:00.001-05:00

Today we celebrate what would be Sophia's 7th birthday. This is a picture of her last birthday with us. I'll bet the cake in Heaven is fantastic!

Saturday was a quiet day/I saw the bunny

2010-02-06T23:53:00.001-05:00

Not much happened today. Ambrose was up a bit on his O2 but seemed more like himself. No fevers, improvement in color and quantity of trach secretions. His blood culture came back in the middle of the night growing something but they think it was just a contaminated sample, since an earlier culture was clean and he's not having any symptoms. Of course they drew another one just to be safe and decided to put in an IV even though 2 attendings said he didn't have to have one. But of course now that it's there they won't remove it. Ambrose seems to be working on that himself. Our friend and Ambrose's early interventionist, Mary came to visit us and brought some treats and a bag my husband put together for us as well.

I was just speaking with the mother of a 1 year old with leukemia and the mother of a 3 1/2 year old with neuroblastoma cancer who just had his 9th surgery. We were speaking of how amazing and loving and HAPPY our children are! (Not to mention Brave. When you are afraid to do something, just think of them.)

As a complete aside - I saw the bunny today. Two years ago, when Ambrose was born and I spent the whole cold winter here with him in the ICN, there was a black rabbit who lived outside of the North entrance of the hospital. People would leave lettuce and apples and the like in the snow. When I saw the bunny I knew it would be a good day.

"Bunny Rabbit" was a nickname I had for Sophia and it felt like a little sign from her. One day it practically came running up to me, as if she said," hurry, there she is!"

I later learned that the previous summer someone had released some domesticated rabbits there because they thought the patients would enjoy watching them out the windows. (There are some patient rooms right there at ground level.)

As I've approached the hospital these past several cold mornings I wondered if the rabbit (or rabbits) was still around. When I saw him this morning it just made me so happy!

Bigger trach = Better results

2010-02-05T12:35:00.002-05:00

The ENT doc just came and changed his 4.0 PED cuffed trach to a 4.5 and, despite some bleeding, he is ventilating better and able to come off of the rate and back to his previous settings of just CPAP and pressure support (7 over 8). Mechanical problem indeed. Thank God!

Ambrose is having a BAD morning!

2010-02-05T09:35:00.002-05:00

When I came in this morning Ambrose was on pressure control with a rate of 24 on the ventilator. (Meaning he is no longer breathing on his own with just the extra pressure of CPAP and Pressure support.) Apparently he started having some severe desturation episodes where his sats were as low as 20 and not going much over 60 with bagging. He has had several doses of xopenex (avariation of albuterol with a different propellent) and duo nebs. He had 2 less severe episodes yesterday that responded to the bagging and xopenex.

His blood gas showed high potassium and CO2 but when they rechecked them from a venus sample they were OK.

He had another fever. (Day 8)

PICU attending Dr. Braga's careful observation led him to notice that there was a problem with his trach. (Ambrose has very unusual anatomy and currently uses a custom trach that is longer than usual with an increased angle because the standard sizes tip back and occlude against the back wall of his trachea and also to try to bypass areas of tracheomalacia. When they put him on the vent originally for just the CPAP and pressure support it would not work due to the significant air leak around his usual (uncuffed) trach. They needed to put in a cuffed trach which is a standard pediatric size. The larger diameter of the cuffed trach made it difficult to put in and resulted in blood tinged secretions for the first 2 days.) He noticed that Ambrose was breathing through his mouth. When he moved the trach around a bit he seemed to do better. So they over inflated the cuff , which may be holding it in a better position for him and he seemed to be breathing much better. They subsequently were able to decrease some of his vent settings, but he is still on a rate and higher pressure support than yesterday. So we are hoping this is more of a mechanical issue than a worsening of his lung disease. We are waiting for his ENT Dr Smith to come scope him and give his guidance about what trach may be best. (They ordered a custom cuffed trach for him but it will take a few weeks.)

Please send strength our way.

Positive Pressure is a "+"/A+

2010-02-04T12:36:00.002-05:00

Ambrose remains stable. No big changes. He continues on pressure support of 7 over PEEP of 8 at 35% O2. The good news is that is chest xray looks good - no pneumonia, relatively clear. Without those distractions however it is very noticeable how crooked his spine is and that his heart is really far to the left. (He is definately NOT a republican.) He continued having scattered fevers (but none so far today). They decided to start him on antibiotics last night based on the continued fevers. (Last night was day 6 of fever.) He is getting Cipro and Tobramycin nebs. His trach grew moraxcella. (sp?) Virus panels were all negative. (Which doesn't mean he doesn't have a virus but they only test for a few major ones.) He still has tons of secretions, but they are no longer blood tinged from the trauma of having a cuffed trach put in. He seems more comfortable to me.

His Daddy visited yesterday and brought some of Ambrose's little buddies, including "Little Buddy" (Thank you Ben) and "Pierre the Polar Bear" (Thank you Carole!) "Marvin," and "Spotty." They were all happy to see each other.

Today he will be getting some physical therapy. Yeah!

Brosie is such a good boy!

Ambrose in PICU 2010

2010-02-03T11:37:00.002-05:00

My darling Ambrose has been sick along with Mommy for the last 5 days. The first few days he had fevers of up to 102.9, lots of coughing and increased discolored secretions. The good news was that he was NOT requiring any more O2 than usual. I kept him on his CPAP around the clock for additional support. Tuesday morning, after moving him, he couldn't keep his sats up despite cranking his O2 up as far as it goes (10L). Similar to previous episodes, he required bagging. (He is breathing but need some extra force behind his breaths to get in enough O2.) He would sat well with bagging him at 10L, but we can not do this continually. So we called rescue, transported him to BMH where they bagged him for over 2 hrs. until the DART team came to transport him to DHMC's PICU. They put in a cuffed trach because he had a big air leak around his trach. The cuffed trachs are hard to get in and cause some bleeding. Ouch!

He is getting pressure support (basically the same thing as bagging but controlled by a machine) and CPAP through the ventilator. He is stable. Don't think he'll be here long but you can never predict.

Sophia Memorial Day Part 2

2010-01-22T10:47:00.002-05:00

Sweet Angel Sophia Carole Brown Memorial Day

2010-01-22T10:31:00.002-05:00

Please remember my darling lovely daughter Sophia who died in my arms 3 years ago today.

She was almost 4 years old. She spent 5 days on a ventilator before her heart gave out after suffering respiratory failure from Human Metapneumo Virus.

Today Ambrose turns 2!

2010-01-19T11:34:00.003-05:00

I have had the privilege and joy of holding my beautiful baby boy in my arms for 2 years! I pray that I will have at least 2 more years with him!

I am in awe of him everyday! He is the sweetest most loveable boy and I am so honored to be his Mommy!

Ambrose to turn 2 on January 19

2010-01-07T22:45:00.002-05:00

Brosie's 2nd birthday is right around the corner.

His birthdays are very special as most children with Taybi-Linder Syndrome die before their 1st birthday. Sophia almost made it to her 4th birthday. She was the 5th oldest child with this syndrome (of the 34 reported cases throughout the world since it was identified in 1968). The oldest was 6.

We are having a birthday party for him at 2 p.m. on Sunday, Jan. 17. Let us know if you'd like to come.

...and to all a good night!

2010-01-03T11:59:00.003-05:00

Sleeping at night has been an ongoing struggle for Ambrose, as well as for Sophia. Blind children often have sleep disorders as light is what sets our internal clocks.

Sophia eventually settled on a pattern of sleeping from about 10 pm until 3 am. Then woke and needed suction repeatedly for about 2 hours. She would stay awake until about 9 a.m. then sleep until around 2 p.m. Her neurologist said "sleep hygiene" (making them stay awake all day),was the most effective treatment, but there was no waking her when she wanted to sleep, or lulling her to sleep if she wanted to be awake. Eventually I tried Melatonin at night which helped her to sleep a little longer overnight.

I tried Melatonin with Ambrose last year to no avail. Ambrose will occasionally sleep all night, sometimes even for a few days in a row. We will hope maybe he will stay on this schedule but then he will switch it up and stay awake all night for a few nights, or sleep half of the night. His only consistent sleep habit is falling asleep around 10:30 a.m. until about 2 p.m. He does usually seem to get enough sleep cumulatively, just not consistently at night. Then I feel guilty sleeping. I wake up frequently to see if he is still awake and kiss and stroke him. He's laying awake bored and lonely, then sleeping all day and missing lots of interactive time.

A few months ago I read an article in Future Reflections, a magazine for parents and educators of blind children, about a girl with this problem whose doctor recommended using a light therapy box. She used it for a half hour each morning and from the first day began sleeping through the night. If she missed a day, she didn't sleep.

I began researching online and found numerous references, and positive customer reviews about them helping with sleep regulation (not specific to blind people) as well as season affective disorder. It is supposed to replicate sunlight and wake you up for the day. The newer ones are smaller and use blue light instead of blindingly bright yellow light, as they have found that the blue light rays in sunlight are the ones that are most effective. Blah blah blah. ...I got one and tried it....and tried it ...and tried it . He would fall asleep during or immediately after using it, instead of being awakened by it. Some reviews said it worked right away, some said it took a few weeks. When he would eventually have some better nights of sleep I 'd wonder if it was starting to help, but then he'd be back to staying up.

I've finally decided to give up on the light therapy.

I'm always searching for things that may be useful or interesting to Ambrose. I came across a website for special needs kids that featured a section of "sleep help" items. I ordered him two things from here for Christmas. The "Cuddle Cub" and "Cozy Cookie". Cuddle Cub is a stuffed bear with a heart that vibrates a heartbeat rhythm for several minutes after being squeezed and is very sensitive to movement so he can reactivate it easily. (There are many similar ones out there that make a heartbeat sound, but I don't think he could hear that.) I was very optimistic about this, as he like vibration. Cozy cookie, which we haven't received yet, as it is backordered, is a fleece gingerbread boy filled with gingerbread scented rice that you microwave to warm and soothe. This too is very exciting as St. Ambrose is the patron saint of gingerbread (as well as students, bees and beekeepers, candlemakers, masons). I learned this when I was pregnant and gingerbread boys have had special significance to me ever since.

Needless to say, Cuddle Cub doesn't help. Cozy Cookie is my last hope.

Ambrose has had several days this week without getting enough sleep at any time of day. 6-8 hours a day, instead of 12. Not sure why. Sub-clinical seizure activity?

He has been trying to make up for it the past couple of days.

It is now nearly 1 p.m. and I am watching Brosie peacefully napping, as he has been for a couple of hours now.

Thanks for reading. I hope you all have a restful night.

Merry Christmas to all ...

2009-12-28T14:40:00.002-05:00

Little Ambrose has been doing pretty well. We just got a stander loaned to us and he doesn't seem to mind it. It is quite a production putting on his AFOs, then knee immobilizers, then strapping him in. Hopefully it will help him. Doesn't he look like some kind of robot in it?

Ambrose has woken up crying a few times and I don't know why. It is always out of a sleep. Did he have a bad dream? It is so sad because he hardly ever cries. With his CPAP on he is able to make real crying sounds. Look for video in sidebar.

Home

2009-12-11T20:26:00.002-05:00

We are now home. Ambrose recovered from the anesthesia after a few hours.

The MRI showed that his spine has not gotten any worse and showed no evidence of any damage to the spinal cord. They may want to do some flexion/extension studies as an outpatient.

Ambrose did well at the hospital then needed a huge amount of O2 when he first got home and has since settled back down.

Spinal Exam

2009-12-10T22:32:00.003-05:00

It is now 10:30pm and I am waiting for Ambrose's paralytic to wear off so he can come off of the ventilator. This was necessary to keep him extremely still for a 90 minute MRI of his head and C-spine. Ambrose has a couple of vertebrae near the top of his cervical spine that curve dramatically forward causing his spine to make an "S" and possibly impinging on his spinal cord, which could potentially interfere with breathing. It was looked at when he was a week old because Sophia had had a similar issue. Her C1 vertebrae was heart shaped. She also had a tethered spinal cord, meaning the cord, which is usually free floating but hers was attached at the bottom. Also both of them have problems throughout the spine where none of the vertebrae fit neatly into each other. They are supposed to stack like tuna fish cans and theirs just don't. On top of that they both have scoliosis. At the time it was felt that it didn't look as bad as hers. Last fall he had an emergency quick brain MRI to rule out hydrocephalus. It also showed the C-spine but no one was looking at that. A few months ago his neurologist was reviewing his files and saw this and was concerned with how bad it looked and said it looked much worse than the earlier study. I was very concerned to see if it has continued to get worse. Earlier today, the neurosurgeon came to talk to me as she is the one who will review it and who also followed Sophia's spinal issues. She said his spine looks "really bad" and "worse than Sophia's." That comment is based on last year's quick brain (which doesn't provide as detailed information since it is very brief). I was a little shocked to hear that. She showed me the images on the computer and yeah, it's really curved forward in a spot that would make it extremely difficult if not impossible to ever correct. (Not that we'd necessarily want to pursue that). It might be something that could benefit from some type of bracing but we have to wait and see what the images tell.

We should be able to go home tomorrow but want to wait to talk to neurosurgeon about this and she has some surgeries tomorrow so she wasn't sure when she's get here.

It's now 11:15 and he is still on the vent. They tried twice taking him off and he wasn't ready. I had hoped they weren't going to have to give him paralytics but the images were initially too blurry as he was still moving. As you can imagine they would completely supress your respiratory drive and require you to be ventilated. I think I'm going to be up late as I really want to see him come off the vent and breathing on his own again. They told me it can take up to 2 hrs to wear off and they gave it to him at 9:15. It's been 2 hrs. now.

Some Hospital pictures

2009-12-10T12:06:00.000-05:00

Ambrose back in PICU

2009-12-09T18:37:00.002-05:00

Darling Ambrose, while very stable most of the time, has had several unexplained desats (drops in blood oxygen saturations indicating he's not getting enough O2) which have occasionally required bagging (manual ventilation by ambu-bag) to get his sats back up. Then once he was over it, he was absolutely fine or even better than before. Last night, or rather this morning at 12:45, he had an episode which did not resolve with bagging. Bagging would bring his sats up to 100 but when I would stop and switch him to CPAP with maximum oxygen (10 L- a lot!) his sats would fall again. We bagged him off and on for 45 min and, impending blizzard on the way, headed out to the BMH(my lovely local hospital, and employer) ER. Of course by the time we get there he is stable and able to start coming down on his O2. Despite being stable I feel that something is obviously going on and want everyone to get their heads together and figure this thing out. So by the time the DART team arrived at BMH it was 4:15 am and I had to drive myself up to DHMC in the snow. Boy was I tired. We arrived at 5:30 am. He has been doing wonderfully ever since. Thank God!

I have requested numerous consults ( quick brain MRI and consult with neurosurgeon previously scheduled for next week to check his C spine "retrolisthesis" hopefully will occur tomorrow), scope by ENT doc to check trach accompished, (looks OK. I had thought the extra long length of his custom trach was causing the coughing he experiences often after moving and sometimes precipitated spitting up. He is willing to try a slightly shorter trach with the same custom angle.), consulted with pulmonologist, consulted with GI doc - will be doing an upper GI tomorrow to look at degree of reflux and possibly get info about if his Nissen fundoplication (which should prevent reflux) has loosened up. If that doesn't give enough info may then persue a PH probe test.

Hopefully he can go home in a couple days. He has some crackles and coarse breath sounds but all labs and vitals seem OK, no fever, no pneumonia. Elevated CO2 levels. Will try higher peep CPAP tonight and repeat blood gas in the a.m.

Ahhhhhhhh. Hope to get some sleep tonight and hopefully some ideas. I fear we may leave with several possible theories but no answers or solutions.

2009-11-14T06:08:00.001-05:00

No more fevers but some crackles and still spitting up a few times a day. I hope he continues to handle it well.

2009-11-12T18:59:00.002-05:00

We are all moved in to our new cozy home. We are really liking it, especially the fact that Ambrose and Mommy now have a bedroom to share just through the wall from the living room and no longer have to sleep on a futon in the living room. Since it is a single story home Ambrose can go everywhere. Yeah! He's actually been sleeping better too! There is still a LOT of unpacking to do though.
Ambrose has been staying out of trouble, but has us concerned as he currently has a fever. He has been spitting up a little every day. (He had Nissen Fundoplication surgery to prevent reflux when he was 6 weeks old. It will loosen up over time, much quicker in children who have seizures. Sophia's also loosened up after about 18 months. She eventually got a G-J tube, which sends food into the small intestine instead of the stomach. It stopped the reflux but has problems of its own. Redoing the surgery is more complicated due to the scar tissue that forms) In the spring he started being able to spit up a little, but it bacame very infrequent after starting Prevacid a couple of months ago. I'm not sure what changed, but it is daily occurance, despite using a farrell bag, which attaches to his G-tube to allow pressure to be relieved and can often prevent actual vomiting.
The main concern is him aspirating the refux, which he seems to do. There are times, including this morning, that it seemed pretty clear that we were suctioning formula from his trach right after he refluxed. There is not much we can do about this which is very frustrating since it can cause an aspiration pneumonia. Sophia had 3 life threatening pneumonias before she got her Nissen.
Ambrose had a 101.4 fever this afternoon, along with increased seizures. It came down with Tylenol. I have put him on CPAP and the good news is that he is NOT requiring any more O2 than usual.
Please keep him in your prayers. I WILL keep you posted if anything happens.
On a positive note, he has been having a lot less seizure activity lately. He's actually had a few days each week with ZERO seizures! Previously un heard of.
Ambrose wore his Amazing Ambrose superhero costume for Halloween. Sophia was Super Sophia on her second Halloween. I will find a picture to post.
I have begun working at Brattleboro Memorial Hospital and I love it!
I hope you are all well. Please keep Brosie in your prayers and Sophia in your heart!

Daddy's Arm

2009-10-18T13:17:00.001-04:00

Return of BLOG SLACKER

2009-09-29T10:55:00.005-04:00

Finally!
Life has been quite busy lately and I have been meaning to post so many times. I hope you haven't all given up on me.
My darling boy is doing well! He is now almost 21 pounds!
He started taking prevacid a month ago to cut down on stomach acid, which has significantly improved the reflux problem It only happens every once in a while now. He had another increase in his Zonisamide (following an increase in seizures) which has also helped with the seizure frequency. He averages about 3 a day now, which we can live with.
He had his MMR and varicella (chicken pox) and Hepatitis A vaccines which caused him several days of fevers (which are always accompanied by extra seizures). Frustrating because you know it is probably the vaccines but cant help but worry if he is actually getting sick.
He has been wearing his "Boots" (AFO foot splints) and knee immobilizers as you can see in the pictures. He doesn't mind the boots and is usually a good sport about the knee immobilizers. He only wears them for a 30-45min a couple of times a day. He does seem to be able to straighten his legs a little bit more.
Ambrose and Mommy got our flu shots last week and are anxious to get the swine flu shots as soon as they are available.
Don't forget to get yours!
We have sold our house and are closing on the 21st of October, so we have a lot of work to do. We are moving locally and downsizing which will be a big help financially. I'm just trying to figure out where I'll put all of Brosie's stuff. The boy requires a lot. His monthly medically supply order alone takes up a lot of space. Then there's 2 lg. liquid O2 cylinders, 2 huge "M" tanks, several small travel tanks, more equipment, TOYS, TOYS, special seating, exercise/physical therapy stuff, crib,...
I am taking a nutrition class this semester and applying to Vermont Technical College for next year. Wish me luck.
Please keep Ambrose and Sophia's friend Ben in your prayers. He is in the PICU again. There is a link to his blog in the sidebar.
Sorry it has been so long. Hope you all have a wonderful day.

2009-08-22T11:33:00.007-04:00

Wow! I have really been slacking on my blogging! Sorry about that!
Brosie is doing pretty well. Please see new video of him on top of video bar (to the right. If it is not linking to the correct video I have added a link to in in the LInkin' Logs section just below the vido bar). Also, pictures from Sophia's garden of tall roses reaching up to Heaven for Sophia to smell them, as well as some cute Brosie pictures.
He has seen some improvement in his seizures since starting a new med Zonisimide (a.k.a. Zonegran) and discontinuing Phenobarbital. Although he has had a few spells of increased seizure activity, including this morning.
He's always got to keep us on our toes, so he traded seizures for some GI troubles. He seems to sometimes have decreased gastric motility, causing reflux and occasional constipation, which is so unlike him. His diet is extremely consistant but this problem seems to come and go. It's not clear what is causing it but he did have a consultation with a new GI doctor, so that's a start.
He is growing well. He grew an inch this past mont and is up to 28.5" long and 19.5 pounds. He's 3.5 " longer that Sophia was at this same age and roughly same weight. He really loves to stand but cannot straighten his legs all the way. They are quite stiff, as are his hips. We do stretches but it hasn't changed much. He still hasn't received his foot splints and knee immobilizers. (I know that last one sounds horrible.) He had a fitting with the foot splints but they had to take them back to make adjustments. He didn't seem to mind them though. We got similar ones for Sophia but she wouldn't keep her heel in them. She was like Houdini. She would always get out somehow, so they were of no use to her.
We have been busy as we have been trying to sell our house. We want to stay in the area but need to downsize. Of course this is not a good time to sell a house, but you've got to do what you've got to do. We worked hard on spiffing it up, decluttering and trying to keep it clean. We've had several lookers and one offer. Everyone seems to like the house but are picky about things we can do nothing about, like highway noise and a right of way through our property that has never needed to be used.
I am planning to start taking a few classes toward a nursing certificate/degree.

Ambrose Speaks!

2009-08-08T11:50:00.007-04:00

Click right to see video of Ambrose being very talkative while wearing his CPAP valve. In fact he stayed up all night talking.

Doin' fine in the summertime

2009-07-27T16:11:00.003-04:00

I'm pleased to report that Brosie is doing well. He seems to be back to his baseline respiratory status and O2 requirement. We are continuing to use the CPAP at night only.

He started a new seizure med, Zonisamide, last Wednesday, and is simultaneously weening off of Phenobarbital. It is to early to say how it is working, especially since he started at a very small dose. I am excited about getting him off of the phenobarbital. We have talked about this for quite a while and have actually reduced his dose several times already. The problem is that it can interfere with the absorption of other meds, and more troubling is that there are questions about its effects on the developing brain. Despite this it continues to be the first drug they put epileptic babies on.

Brosie went in my neighbor's pool last week. I just put his legs in, apparently it was too cold for him so he climbed right up me. Instead we floated him around on a raft. Hopefully the water will warm up soon and we can try again. Of course it is scary with the trach, but I think it is a nice sensory experience.

We hope you are all enjoying your summer!

A Year and a Half!

2009-07-19T10:18:00.002-04:00

Today is Ambrose's 18 month birthday. I have had the joy and honor of holding my baby boy in my arms for a year and a half! Thank you God! He is sweet, loving, easy going, strong, brave, feisty, warm, soft, funny, and all around AMAZING!

He is doing very well. He got over that cold very fast. His secretions are finally drying up. He is sounding good and is in his usual range of O2. He is growing well. He has finally caught back up to where he was before his hospitalization and ketogenic diet. The other day we saw the ENT who scoped his with the latest custom trach (slightly longer and with a slightly increased angle to it) and it looks to be quite good. It is a little long (close to the krina) but is not leaving room for any trach collapse below it and it doesn't seem to be bothering him. This is good news. We will have to sterilize and reuse them because they cost nearly 4 times as much as the nearly identical non custom ones.

He also had some new ear molds made which will hopefully stay in better.

He has slept better for the past few days as well.

We will be trying a new seizure med-Zonegran (once our pharmacy figures out how and if they can get it) and weening off phenobarbital.

Happy Ambrose's half-birthday!

Ambrose Fan Club

2009-07-13T22:35:00.003-04:00

While Ambrose is still feeling a bit under the weather, he has not had any more fevers. Yeah! His secretions are still thicker and he is sleeping more (mostly during the day) and using CPAP a bit more but not significantly up on his O2. Way to go Brosie!

This is a picture of Ambrose with his nurse Rebbecca/"Auntie Beck." (Vice President of the Ambrose Fan Club.) Yes, it can get a little confusing around here with the names.

We got the shirts from Idakoos.com.

They have over 3 billion designs including thousands of names available on a wide variety of shirts, bags, mugs, signs. You know if they have the name "Ambrose" they've got pretty much everything. They are from some undisclosed country apparently because some of their designs don't translate very well, as in the Obama slogans: "Obama is my Homebody", and " The power to change the things," and "I'm voted for that one."

I'm sure those are big sellers! Feel free to join the Ambrose Fan Club and send me a picture of yourself.

You give me fever

2009-07-12T10:17:00.002-04:00

Well, it's official: Ambrose has caught my cold.

He has a 103.7 degree temp. His secretions are thicker and yellower. He's had 10 seizures from midnight to 10am today and his heart rate is currently 183. Hopefully he can weather this at home. Please keep him in your prayers.

Ambrose's World

2009-07-11T11:38:00.004-04:00

Ambrose continues to be down on his O2 and spending much less time on CPAP. Go Brosie, Go! So far he has not caught my cold.

His "hearing guy" (it's just so much easier to call him that than "consultant from the parent infant program of the Vermont center for the deaf and hard of hearing of Austine school for the Deaf) set up his new ear molds connecting to his hearing aids worn on his shirt. The idea is to cut down on feedback and keep them in better. It definately helps with the feedback and we have been able to keep them on for longer periods. The long tubes do create new ways for them to be pulled out. He does not bring his hands to his ears to pull them out, like many kids do, but he can catch onto the loops.

We compared Ambrose's audiogram (results of his ABR hearing test) with Sophia's. Although they were both described as having "moderate to severe" hearing loss, he seems to have more hearing than her. Yeah! We definately want to give him as much access to hearing as we can, especially since he cannot see.

Imagine how hard it would be to learn about your world, starting out with no vision and limited hearing and limited movement. How does he know how big the world is around him? How does he know how big the room is? He knows that we pick him up and move him from one place to another. Sometimes we sit in a special seat and take a bumpy ride with air moving against him. Sometimes we sit in a special seat and take a smooth ride and end up in a place with different smells, different sounds, where they often undress him, squeeze his leg, stick things in him, and sometimes poke him with sharp things.

Sometimes we slide into a vat of cool round things, sometimes we sit in water and have it poured over us. Often there are interesting things to touch, kick, and bat at, and interesting sounds, and lots and lots of hugs and kisses.

When we read stories, how does he know what it is about without seeing the pictures. How do you learn what words mean, especially if you can't hear then clearly?

Vision is usually the motivation for a baby to try to move. Let's get to that toy, or to Mommy. Thankfully Ambrose loves to move out of the joy of moving and doesn't seem afraid of anything. He is trusting and curious. And OH SO WONDERFUL!

Greetings from the ball pool

2009-07-07T12:49:00.004-04:00

The amazing Ambrose has been down on his oxygen the last few days and sounding good. Hurrah! He's still up to his old tricks of staying up most of the night. Last night he slept from 1130pm until a seizure woke him at 2:30 am. He then proceeded to wiggle all night until he tried sleeping around 8 am and was interrupted by a cluster of seizures over the next hour and a half until he finally slept after getting his seizure meds. (Seizures are bullies! They like to pick on defenseless little cuties who never did anything to them! They do not abide by signs restricting them from the premises. They do not listen when you tell them to , "get off of him," or " leave him alone!". Nor can you chase them away with a broom.) The neurologist says his ability to mount a seizure is "impressive." I'd rather him not be impressive in that way.

Looks like yet another rain storm about to start. Hopefully we will not lose power, which is a challenge with some of his medical equipment.

Happy 4th of July!

2009-07-04T10:22:00.003-04:00

It's been a quiet week - lots of playing, NO appointments!

Ambrose actually slept all night, for 11 hours the other night. Then, last night he was up from 3:30am to 9am. There is just no rhyme or reason.

He has been up on his oxygen, which concerns me. His oxygen system is pretty convoluted with liquid oxygen and compressed air run through a heated chamber with sterile water to provide humidification and a bag of air, which is part of the CPAP system, It then travels through a hose with heater wire inside it to his trach. There are many places there could be a leak or malfunction. But then when I switch him to his travel tank to go to the playroom, he is on his normal amount, which is reassuring. Not sure what's going on there.

Ambrose will probably be sleeping till I leave for work. Then he will wonder where Mommy is.

Ambrose has been making a lot of vocalizations. He has a very sweet voice. The CPAP helps with that by forcing him to exhale through his mouth or nose, forcing air out over his vocal cords. He usually breathes in and out through his trach, below his vocal cords and therefore rarely makes any noise.

Gotta go. Seizure.

Magical Play Room

2009-06-29T19:44:00.004-04:00

I finally cleaned out Sophia's Make a Wish playroom for Ambrose to use. We have had very exciting adventures the last few days with the ball pool, that is entered via slide, and exploring the "little room."

For those of you who know, we had a make a wish for our daughter Sophia a few years ago. We converted a screened in porch into a year round room and picked out lots of fabulous sensory toys which The Make a Wish Foundation of Vermont bought for her, including a vibroacoustic chair (way too big for Brosie), lots of switch toys, musical instruments and positioning aids. I kept most of it, but the room, which doesn't have heat became something of a storage area. I've been taking things out for Ambrose now and then but had never used the ball pit which was buried.

The "Little Room", dubbed a "baby garage" by my visual educator friend Kerry, was designed to be used by visually impaired babies and toddlers. You cover every surface with stuff so every move that is made creates an interaction with something, encouraging exploration and teaching about object permanence.

Now that I've gotten it cleaned out I don't know why I waited so long. The time just seemed right finally. Hopefully we will have LOTS of fun playing everyday!