Give a Smile to a Special Child

Meet Judah...

A fellow cleft mommy, Ali and her adorable little one, Judah are raising money for Operation Smile. Like Paige, Judah recently had his surgery in a wonderful high-tech American Hospital and out of their gratefulness, his family hopes to raise enough for at least one surgery for a cleft child in need. It's incredible that through this organization it would only be $240 to give a smile to a beautiful child. We are so blessed to have access to the most amazing medical care in our country and my heart goes out to those areas where it is difficult to get the care for these children. The gift of a smile changes the life of that child in so many ways. I want to call all of Paige's friends, family and supporters to give in her and Judah's name and help them reach their small goal.  It would be awesome if we could blow it out of the water and pay for many more surgeries than just one. Thank you for your prayers, love and support.  Spread the word and raise awareness of how special and wonderful our cleft babies truly are.

Donate here------> Support Operation Smile in Judah's Name...friend of Paige

Love this video of a little girl who has her repair done at age 4. Watch when her face light up when she see the results for the first time.
Operation Smile Video

We love seeing Judah grow and he captured our hearts from the start.  He had his surgery about a month ago and is really doing awesome.

See Ali and Judah's blog here-----> Our Journey with Judah

Judah pre-surgery

Post Surgery!

Healing so well!

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 me...it 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 again...it 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.

And away we heal..post surgery update

We are four weeks post op and I would say she is almost 100% back to herself.  Her palate looks really good.  It looks mostly healed over with a few white threads working their way out.  We don't have to see our Plastic surgeon for 6 months and even then only for a check up to make sure no holes opened up.  He says everything looks awesome.  Upside to palate surgery is we don't have to massage her lip or try to shove plastic tubes up her nose or anything else like that.  Instructions a simple and easy to follow enough.  Pain medication first week or so while uncomfortable, arm restraints 3 weeks, pureed food 6 weeks, post op check ups with ENT and Plastic Sugeon and report to speech therapy 6 weeks after. 

Wearing Arm Restraints

Happy girl on the morning of her first birthday, 3 weeks post op and no arm restraints!

Paige finally got her first tooth on her 1st birthday.  It is on the upper left, the opposite side of her cleft, and the right front tooth feels like it is right under the surface.  The only odd thing about this is that most kids get the bottom two first.  But some kids, even ones without clefts get them on top like Paige, so we are not entirely sure if it is related to having a cleft.  Some teethe as early as 3 months and others at 14....We have been saying she is "teething" for most of her life.  It seems to be that excuse you think of for why a baby is being fussy and drooling a lot.  We kept looking for the ones on the bottom...  Feeling them and asking them, "when are you going to pop out?"  This top tooth was so far out we must have not realized it was there for awhile.  

Here is a great pic we took right when we discovered her tooth and it shows her healing palate.  It doesn't look painful anymore and you can see the lone stitch hanging down. Please excuse dinner on her face...I'm guessing butternut squash.  

So she got to eat some cake at her birthday party today...the first solid thing since before the surgery.  The doctor said it was soft enough, but she should continue to eat puree food for two more weeks.  

Can I say, "I kind of miss the No-nos?"  She was easier to watch because she couldn't put anything in her mouth that she would choke on.  They never kept her from crawling, pulling up and playing...just keeping things out of her mouth.  Well, when you have a one year old, things in mouth are a pretty common occurrence.  We just try to be careful and watch that she doesn't try pokey things like pens. 

I felt so happy I could put a beautiful before picture and after picture up at her one year party, to show people how far we have come.  

Here is Paige as a newborn, 6 months and 1 year.

I write this blog to keep family and friends updated on her progress, especially those not on Facebook.  I also use it as a safe place to talk about everything cleft, so people know what they are getting and I am not posting hard to see photos of surgeries and such other places.  I hope that in sharing our story, it can help other cleft families on their journey, answer questions, demonstrate how to get through all the tough times and show them how a child with a cleft can be loved and adored.  

One thing that really hit me after the palate repair....I don't have a child with a cleft. I had a child with a cleft.  Her lip and palate are whole now.  Hopefully we will have no other surgeries until her bone graft at 8 or 9 years old.  

We made it!

I wanted Paige's 1st Birthday party to be special to celebrate making it through a year full of so many wonderful and difficult things in Paige's short little life. We made it through finding out about her cleft, a long labor and birth, countless doctors appts, feeding issues; Ear Tube Surgery, Lip Surgery, more doctor's appts.; normal baby issues, new job, new home, new church, Palate Surgery and it was ALL worth it to have such a happy, smart, funny and beautiful child with such a unique personality, joy and love for this World. Thank you everyone who has supported us and prayed and truly lifted us up through it all. We are blessed. We hope year two is slightly less eventful.

We took these pictures when she was 11 months, a week before her palate surgery and 3 weeks before her first birthday. We weren't sure how good-natured she would be after the surgery and she would be wearing her No-no arm restraints. My good friend, Sara from  Banana Bugz Photography  took the one year photos.  Then I had Amanda from Paper Cut Couture Etsy Shop to design the invite using Sara's picture. 

The Party...

With lots of help from family and friends, we created a fun cowgirl party just for Paige! I cut and sewed the fabric bunting.  My mother helped me create the "Happy Birthday" banner and cupcake toppers and signs on her Cricut. The font I liked the most was from the Storybook Cricut cartridge and the western shapes were from a variety of cartridges. The polka dot ballons and extra large balloon, paper straws and high chair ribbon banner were from Polka Dot Market.  I've ordered tissue poms from Pomtastic Etsy Shop a couple of times and she has alway done a great job.    The wood tags were made with a wood stain pen and a wood burner which is cheap and easy to do. You can look up other projects, pictures and pin ideas I used for the party on My Pinterest Board.