Ears, Kisses, Cupcakes, and Lungs

I really need to get back to posting more frequently so that I don't have so much to say in one! Happenings this week included Annabel having her audiology appointment on Friday. She wasn’t real cooperative but our audiologist was able to decipher that her hearing is at worst case borderline normal (still nothing to correct) but she think it’s actually better than that. Annabel has a harder time staying focused on things and was pretty cranky, the audiologist said that she might be harder to test than the other two for a few years given that children with CP tend to have more sensory issues. We are working on massaging/playing with her ears to hopefully help her future tests. Thus far the audiologist hasn’t been able to run the test that shoots a signal to the ear follicles and in people that can hear normally, a signal will be shot back (for Johnathan this isn’t the case). This test will also give better information on the individual ear so hopefully we’ll be able to get this test done at their next appointment in April. If she’s doesn’t cooperate to run this test then the next time she is under for an MRI or another procedure then they will run an ABR to get more definitive data.

On Sunday Mady was very cute and started giving me kisses on the mouth, her first! Of course they are the wide open sloppy ones but I love them! She is also working on blowing kisses but isn’t quite there yet. All three kiddos are working on SO Big! Mady has it mastered, Johnathan getting close, and Annabel varies.
Johnathan has been working more and more on walking, everyday he gets a little braver.
Over the weekend Mady started walking with us holding her hands, it's so amazing how one day they're not doing something and the next they are! We also got Annabel to
pick up an animal cracker out of my hand and off the tray again, feeding herself! The trios weights are coming back up nicely after the flu. At baths the other night they weighed: Annabel 17lbs 10 1/2ozs, Madelyn 18lbs, and Johnathan 18lbs 2 1/2ozs. I'm shooting for some 20lbers!



Friday January 23rd was my dad’s b-day but because we were all sick with the flu we didn’t celebrate it until this week. The trio got to share a cupcake and boy did they like that! We are now working on transitioning all three to sippy cups and are going to start working with self-feeding soon for Mady and Johnathan. That will be a big help once they’re doing that!

Thursday was Johnathan's lung function test and overall everything went well pertaining to him, however, they got started late with the test due to equipment/software issues and then he took FOREVER to wake up! I had to have him up at 4:30 a.m. to eat breakfast and we didn't leave the hospital until 3:00, it was a LONG day for both of us! During the test they realized that the ENT had requested that a CT be done of his head to check his ears for any potential genetic defects due to his hearing loss but that he wasn't to be put under special for it but if there was a chance during another test to have it done. Because he decided to stay asleep so long we were able to get that done too so that was good! I'll call next week to get the results of that. The results of the lung function showed this is lungs are all around improving - better capacity, restrictions are now mild, obstrictions are mild in the large/medium ventricles but are still moderate in the small but moving towards mild. The doctor said that this means that we have him on the right dose of Flovent for now and will probably go down for the spring/summer, perform another lung function in the fall and determine from there what to do for next winter. What this means is that Johnathan will eventually have a history of BPD and will either be "normal" or will have asthmatic symptoms, only time will tell. I asked the doctor how she would recommend handling things in the next few years regarding taking them out in the winter, visitors, etc. and she said that each year will get better but that we certainly will never want to take them around anyone that we know is sick or that has been exposed. As they grow they'll get stronger but they are still quite weak. This year has freaked me out with all the former preemies I know that have had RSV and croup and ended up in the hospital in respiratory distress! After all we've been thru this year I certainly don't want to add any of that to the mix!

Today Early On PT and Speech came and it was a great day! Annabel did so good for PT, I was very proud of her!
She has been working hard lately and showing some great progress! She's back to weight bearing while standing and sitting and we have discovered that she sits well in the "fun chair" with a little assistance at times. Next week our PT is bringing her a pony walker which will allow her to get up and move around more, I can't wait! Annabel starts her aqua therapy again on the 17th, I can't wait to see what this does for her! Johnathan did some great walking during PT today, consistently taking a good 5-6 steps! The therapists were also quite impressed with how well he did riding the horse, getting on and off of it by himself. Our PT said that with their adjusted ages Mady and Johnathan are still on schedule developmentally for walking! We did learn today that Mady will need orthotics on both feet, just over her ankle. I hadn't really seen it until today because normally I'm the one helping her to walk but with her shoes, socks, and pants off you could clearly see how badly she's turning in and putting all of her weight on her ankles - not good! So we'll be getting them for her soon. Annabel may or may not need them down the road too, although hers will probably be a little taller, to the shin.