February 1, 2014 by kruckr
Our boy turns 7 months old today! We are finally in a stretch where there are no foreseeable surgeries in the future (at least for a few months) and that’s pretty awesome. Henry’s lip adhesion has healed and there is no more devices or restraints to wear for now. A BIG thanks to the Jacksonville Cleft Team for everything they’ve done and continue to do (especially Lida Sarnecky), including the blanket they gave Henry (pictured). Henry is nursing again which is a relief for both of us.
Henry met with his cardiologist, pediatrician and neurologist this week. Cardio is super happy, no appointments until May. His pediatrician is happy with how he’s recovering from both surgeries. I’m hoping now that we won’t have any surgeries putting us off track for a while, that we’ll be able to get back into a good routine with his physical therapy and Henry will start meeting his milestones again. So far, he’s still rolling on his sides a bunch, tracking objects visually, putting hands to mouth and cooing. He’s still working on his head control and sitting. His speech therapist wants more advances made in that department before we move onto solid foods, but we have introduced Henry to rice cereal, both in the bottle and a very soupy mixture with a spoon. He did great with both, but it’s messy!
Henry hasn’t had any apneic seizures since Thanksgiving, so the neurologist feels comfortable slowly weening him off the phenobarbital for now. We’re backing off one ml at a time for the next two months (2ml 2x a day for February, 1ml 2x a day for March, and 1ml 1x a day in April). We’ll keep monitoring for seizures, and there’s a good possibility they’ll want another EEG sometime in the next few months since they still haven’t been able to get one on camera yet.
To all the prayer warriors, I know we wouldn’t be where we are without you guys. The Lord is truly gracious, amazing and all powerful. There is no way the last 7 months would have been as successful with out His will guiding us and those caring for Henry. In the next several months, we ask the Lord to keep Henry seizure free and to help his mind and body advance toward reaching his milestones. He’s such an amazing kid and such a blessing. I can’t believe I get to be his mom! Love you all!
P.S. – As you can see in the picture below, his hair is ridiculous … I’m about ready to give up and just cut it off. I know he’s going to look handsome no matter what, but it’s driving me crazy. What do you guys think?