This tiny princess is 9 Months old!! It has been a big month for her… she is crawling now, and has also learned to throw some ridiculous fits – complete with her banging both her feet and head on the ground! She is drinking out of a sippy cup and the bottles are all put away! Woohoo!
I absolutely love watching B & H play together! She lights up when he talks to her and it melts my heart. He is the best big brother – even if he doesn’t know how to be “gentle.” 🙂
We also saw an ENT this month to determine if Hudsyn needs tubes in her ears. We learned that the reason that 95% of cleft affected children need ear tubes is that the muscle that causes the Eustachian tube to drain is a palatal muscle. The absence of a palate leads to the absence of the palatal muscles. Some children experience hearing issues and/or frequent ear infections due to this, but so far we have not had to deal with either one. We are keeping our fingers crossed it remains this way! 🙂 Dr. Glade confirmed H has fluid in both ears and will need tubes to assist in the draining process. She will likely have a few more sets of tubes throughout her life as most cleft affected individuals end up having 3-4 sets over the course of their lives.
H’s third surgery (skin palatal repair & tube placement) was scheduled for September 27, but Dr. Glade (the ENT) will be out of the country then. It took a bit for the doctor’s offices to coordinate but we now have a new surgery date! Hudsyn will officially have a palate (of some sort) on September 20th! I am dreading the surgery as I have been told this will be “hell week” by both the doctors office and moms who have experienced it; but, I am so excited for my baby girl to finally have a palate! She wants to eat “food” so bad… but when she tries anything that isn’t pureed (like yogurt melts or baby puffs) it finds it’s way to her palate and she cries and screams for the next 10 minutes. She is, however, getting pretty good at eating thickened baby food – it doesn’t come out her nose most of the time anymore – so that’s a plus! After surgery we will have to syringe feed for a couple of days again – but then she can go back to her sippy cup! If she was still drinking from a bottle she would have to wait longer – I’m so glad she took to the sippy so well!
I am in a couple of groups on facebook that are for moms of cleft affected babies. Although it is a little overwhelming sometimes, I love being able to see what others have been through, what worked and didn’t work for them, how they dealt with certain situations, what I can possibly expect, etc. I don’t personally know any other “cleft moms” so these groups have been such a blessing to me.
One thing I have learned from them is that the cleft repair is one of the most difficult surgeries – not the surgery itself but the recovery. It is done when the child turns 1 year old which means they are old enough to know something is different. They have to re-learn how to eat, drink, swallow, etc… and they are usually REALLY unhappy about it. So… I’m trying to prepare for that. I hate that my baby has to go through this…but she is tough and I know she can do it!
From what I understand, the surgeon will connect the muscles of the palate and rearrange the tissues and skin to close the palate. Hudsyn’s entire palate will be a “soft palate” until she is 8 or 9 at which time they will perform a bone graft from her hip to form the bone part of her palate. I know she is tough, stubborn, and determined so she will do fine… but we appreciate all of the prayers we can get leading up to her surgery!
