My pot of gold

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

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

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!

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.)

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!

Sophia is welcoming a dear friend to heaven. Eric Swanson

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!

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

Ambrose is in the PICU.

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

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.