Brosie in our neighbor Debbie's pool this year and last:
Monday, July 27, 2009
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!
Sunday, July 19, 2009
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!
Monday, July 13, 2009
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.
Sunday, July 12, 2009
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.
Saturday, July 11, 2009
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!
Tuesday, July 7, 2009
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.
Saturday, July 4, 2009
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.