Sunday, February 26, 2012

Our baby sucks!

That's right it only took 13 months for her to learn to do something most babies come into this world doing instinctively. She never had suction. Breastfeeding did not work for us though I am still pumping and giving her as much breastmilk as I can. Having a hole in her palate is like having a hole in a straw.  After her palate was repaired I fantasized about maybe being able to breastfeed her. She didn't automatically get the sucking thing, returning to same old tricks she learned to get the milk from the bottle. Her mouth would be open and she would put the nipple to one side and bend it against her lip to squirt the milk in. So ya, she had no desire to wrap her lips around the bottle's nipple and create a seal.

Recently we have tried some sippy cups. The problem is most parents are in search of the perfect sippy cup that doesn't leak everywhere. We needed one that would flow without much effort on her part. We tried those rubber ones that she could bite down to open the opening, but she still wasn't really getting a lot. Then we tried cutting that hole bigger so it poured out. It was a messy alternative but gave her the idea to throw her head back and let the water poor into her mouth. Then one time she stole a sippy cup from her cousin and seemed to be getting something from it. It was one of those cheap Toss & Take kind that have no leak proof system to it. So we got her some and started giving her sippy cups of water everyday.  She loved it! She would carry them around and lay on her back all cozy and drink her water. I would swear sometimes she was so close to sucking on it....I would occasionally try and squeeze her cheeks together to get her mouth to close around the bottle or sippy cup spout and I could hear just a little squeak and puckering sound but I still don't think she got what was happening.

Finally just today I saw her tilt her head back with the sippy cup and squeek, squeek, squeek and then the gurgling sound of air rushing back into the cup through the inverted spout. SHE DID IT! She was actually sucking....her palate repair is officially a success on that level.  Now for my crazy hopes of breastfeeding my 13 month old child for the first time.............a ya probably not gonna happen!

(So since writing the above part of this post she started sucking on her bottle too. This video seems pretty ordinary when compared to most babies but for was the very first time I have ever seen her do this.)

She has now cut four teeth.  It took a year to get one and three weeks to get four.  The one on the top-right, bordering the large notch in her gumline, is definitely coming in a little crooked and we really doubt the next one over will even come in at all.  Either way Miss Toothy is all smiles these days...teething like a champ.  People ask if she is crabby and all I can think is she is more or less fine.  She gets cranky just like any other 13 month old, especially when tired. I tend to think that the pain of teething is nothing like the pain of lip or palate surgery and therefor she is not phased. Talk to me again when she starts to cut molars.  Paige's palate has healed up and she has been eating all kinds of solid food.  She has definite opinions about mushy baby food, opting for anything she can feed herself.

It truly is a blessing to be moving on to more average trials and experiences of having a child. But we had to have one more hurdle before breezing our way through parenting.  She was to report to the speech therapist 6 weeks after her palate surgery.  Well we switched insurance at the New Year and when I attempted to make the appointment our therapist wasn't covered.  Neither were the other two recommended to us by our team. In fact there was only one in a 25 mile radius that was in our "network."  She even said she wasn't the one for us and that we should be seen by someone with experience with clefts and preferably someone who worked with our team.  It seems like every little issue we face takes an average of 10 phone calls or more and hours on the phone, while my daughter's shreaks and squeals in the background disrupting the automated response services and makes it difficult to hear information I need to  write down in order to prepare myself for the next office or number I need to call.  She wants her mom to sit and play with her, not ignore her on the phone, talking to doctors offices and insurance companies.  She has taken to closing my laptop and stealing my pens and paper or just collapsing her head between my knees and crying.

So.....I finally worked my way to a case manager who handles out-of-network approvals based on "Network Adequacy" or what I would call the lack of adequate coverage. Even when I ask the first associate if this was even an option since there was only one therapist in my network and she avoidantly said "I'm sorry you do not have any out-of-network coverage. You can only see someone in network and looks like there is one."  Well for those of you dealing with this kind of thing, I recommend you call back and you will get another answer and call back again and you just might get someone who asks, "So you have contacted the one doctor in-network? And we have searched a 25 mile radius for any others? And your daughter has a medical necessity to see this other doctor? Okay, so I am going to give you this number and you need to tell them that and that you need them to grant you network adequacy of the Doctor you daughter needs to see." Hallelujah! Finally a break through!
Now I have a reference # and am working to get our pediatrician to gather and send the appropriate documents to prove she needs the care.  So I am guessing it will take about 4-5 more phone calls and 2-3 weeks to process and Paige will hopefully be able to finally see the speech therapist 13 or 14 weeks post op verses the prescribed 6.  Not bad actually considering how things can usually go.  Plus the therapists I have spoken with say it will be okay. It is not too late to start but to be vigilant and do what I have to do to get her seen.  

So is so awesome to be through the first year. To have the two major surgeries behind us; for her to be able to eat, hear, and start to speak. She has started walking across the room over the last few weeks, which still blows my mind. She is working on being a climber, balancing precariously on whatever she can to reach the next great thing. She has a funny sense of humor and as my husband says she is not too little to rule with an iron fist, as she learn to run her little world. Our 85lb dog doesn't even phase or intimidate her in the least.  And she can rock the pigtails like nobodies business.