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.

iPad

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

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

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

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!