AMBROSE IS 4!!!!

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

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!

More pics of my very patient boy

My Gorgeous Boy

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!

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

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

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

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.