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!

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!