How's Hudsyn??

When Hudsyn was born and I was forced to learn about clefts - something I knew nothing about - I was amazed at how little is known nationwide. I attribute a large part of this to the fact that in the United States we "fix it" and then move on and don’t talk about it. In many other countries, where cleft repair is not as easily accessible, it is a much more common subject. Kids are often unable to have reparative surgery until they are 8 or 9 years old, making such conversation difficult to avoid. Hudsyn will probably always look a little "different" but by the time she goes to school her scars will likely have had time to heal very well. In foreign countries, however, cleft affected children aren’t quite so lucky. 

July is National cleft and craniofacial awareness month so I figured there was no better time to share some interesting but little known information in hopes of educating those who don’t know - even if just a little. 

We all start out with a cleft. Every single one of us. A cleft is defined in lame man’s terms as "a hole or indention in any part of the body." The skull is formed between 5 and 8 weeks gestation. Both sides of the skull form independent of the other beginning at the back. Formation continues around the sides and the two meet. A cleft lip and/or palate is formed when this area does not fuse together properly. 

Interestingly, a cleft can occur in the brain, eye, on the fingers and toes, on the buttocks - which is called a sacral dimple, chin, face - known as a Tessier’s cleft, or basically anywhere else on the body. If you have dimples, those are a form of cleft too! 

Clefts come in all different combinations so every child born with a cleft is unique. Some clefts require no repair while others require extensive surgeries, sometimes throughout the individual’s life. Clefts, whether lip only or lip and palate, can affect a number of aspects of an individual’s life, including feeding, ear health and hearing, teeth, and speech. Sometimes certain syndromes also accompany clefts. Even if a cleft is fully repaired, there’s often many more years of doctors visits, therapies, and/or procedures to treat these additional issues. 

Animals can also be born with clefts. I have seen some pictures during my research since Hudsyn’s birth of dogs and cats who had them. A few weeks ago, however, when we were at a festival in Red River, we met some people who had a dog with a cleft lip. It is so crazy to me the things that go on in the world we live in that we know nothing about! I know Hudsyn didn’t understand what was going on at the time, but it was interesting to me to see that sweet puppy! 

I want nothing more than for Hudsyn to grow up to be proud of what she has been through. I truly believe it takes a special person to persevere through the surgeries and issues that having a cleft lip and palate bring. My sweet girl is absolutely one of those people! She is strong, stubborn, and determined and takes it all like a champ. As she grows, I hope and pray that she remembers how strong and beautiful she is. She is one of a kind and God knew this little lady would persevere through whatever came her way when he created her just the way he did. 

I am often probably too forthcoming with complete strangers about Hudsyn’s cleft. I tend to mention that she was born with a cleft lip and palate before they even have a chance to wonder. I do so both in hopes of spreading awareness, and avoiding the awkward stares. Clefts would be much less taboo if people knew more about them. So, I encourage you to learn more about clefts and craniofacial abnormalities this month. Read about it - or better yet, ask questions! I would much rather someone ask questions and learn about the condition than stare at my sweet girl and make her uncomfortable. As she grows she will only become more aware and concerned about how others see her and I hope to shield her from as much hurt as I can. But, I also hope to show her the importance of such awareness and encourage her to take part in educating others. 

So, Happy National Cleft and Craniofacial Awareness month to you, and please don’t hesitate to ask questions if you have them!  

Hudsyn saw the audiologist again today for a hearing test and even though she cooperated better this time, the results were pretty similar to last time. The audiologist had another one help her this time in hopes of a better, more reliable test. Poor Huddy had the hiccups the whole time she was in the testing/sound proof room so that wasn’t helpful; plus, she really wanted her snacks and she couldn’t have them in there - she gets her eating habits from her mommy. :)

The testing still suggests that she has at least mild low frequency hearing loss. She tested in the normal range for high frequency sounds at low volumes in at least her better ear. Because of the way the testing is done there isn’t a way to determine which ear is hearing what. 

Both tubes tested to be open so that’s definitely a good thing. Hopefully they are finally all straightened out and doing their job. They will retest her hearing in 3 months and we will go from there. 

She has had 2 speech sessions and has really warmed up to Karlen, her therapist. Maybe she will say a few words soon and we won’t have to hear that squawking she she does when she wants something :). 

When she is 2 we will go to her first "Cleft Clinic" where she will be able to see all of the doctors she could possibly need all at once. They all work together to form the best plan for moving forward so I am anxious for that. For now, she seems pretty happy (and sassy) so we will just keep doin what we are doin! 

We have the best prayer warriors and we appreciate all of you. :) 

We were supposed to see Mary, the PA at Hudsyn’s ENT last Thursday. We planned to leave Wednesday evening but with the bad/icy weather in the city we weren’t able to. So, we were able to re-schedule for today. We went to Wichita this weekend so we just stayed an extra night at Isaac’s sister’s house and then drive to the city this morning. 

We actually saw Dr. Glade this time. And PTL, both ears were dry (no fluid present) and both tubes are open. Woohoo. They attempted a hearing test like the one we did previously and both ears tested open. The audiologist thought her hearing was testing better than the time before but because Huddy was having a meltdown they couldn’t get an accurate reading. We will come back in 4-6 weeks and they will recheck her hearing and maybe she will be more cooperative :). 

Hudsyn’s check-up with Mary (the ENT PA) was quick and pretty easy today. There is still evidence of drainage in her left ear so we will try a different antibiotic and continue using the drops in hopes of drying/clearing it up completely . She did NOT appreciate having the drainage sucked out of her ear - and she let us all know about it. Other than that, though, she was a pretty sweet girl. 

If this antibiotic doesn’t do the trick there is one more treatment to try - some sort of powder that will both heal and soak up excess fluid - before we need to look at possibly replacing the tube. We will go back in 2 weeks for her to check the progress and discuss further what we should do next. 

Hudsyn will be re-evaluated for the SoonerStart program next Thursday. Although I don’t think it is super alarming that she isn’t speaking yet, I want to stay ahead of the game and be proactive with her speech/hearing. SoonerStart is Oklahoma’s early intervention program and is designed to meet the needs of families with infants or toddlers with developmental delays. I am anxious to see whether or not she is determined to be “developmentally delayed” according to their criteria or not. If so, she will be eligible for aid in speech language pathology services. Hudsyn has no problem communicating what she wants/needs - it’s just typically through grunts, fits, and hand movements rather than verbal language. Knowing where she is at developmentally will either show us where she needs help or will show us that she is just taking her time learning to talk and and we should be patient. I am eager to learn which category she falls into and what our next steps will be in this sweet girl’s journey. 

We saw Dr. Smith, Hudsyn’s surgeon this morning. He said she looks good but definitely has a fistula near the front of her Palate. A fistula is defined as “an abnormal or surgically made passage between a hollow or tubular organ and the the body surface or between two hollow or tubular organs.” We knew she had a “hole” in the front of her mouth right behind her gum line and that they would fix it when they did the bone graft in the future (somewhere between 7 and 9 years old); but, we didn’t know that part of that hole was this fistula that formed after her Palate surgery in September. The hole is about as big around as the tip of my pinky finger. But, as long as it doesn’t begin to cause her any problems eating or anything we will stick to the plan and fix it when she is a little older. If it does happen to begin to cause any issues they will repair it sooner. 

We will also watch her speech and likely start her in some sort of speech program as soon as she starts saying a few more words. There is also an additional surgery she could possibly need in the next couple of years to aid in her speech development. But, we are kind of in a “hurry up and wait” phase right now. We will wait to see how her speech progresses and how (or if) the fistula affects her eating and drinking. 

Everyone in the doctor’s office thought she was adorable of course, and she cried a little when he looked in her mouth but quit as soon as he was done which was a big plus! She even showed off for him a little :) 

As we were leaving the office, Dr. Smith introduced us to a young man (probably 16-18 years old) who was just “finishing up” on his cleft/surgery journey with Dr. Smith. He told the boy and his mother “this little girl is just beginning her cleft journey and you’ve just finished yours!” The boy smiled from ear to ear. We shared the elevator with them on the way down and Hudsyn flirted with him the entire time. It is always comforting to see other kids in his office and know that there are so many people who have been where we are. 

Although I still struggle with “why” my Sweet Huddy girl was chosen for this particular journey, I am reminded frequently how blessed we have been by the people we have met along the way. Experienced “cleft-moms” have blessed and helped me in so many ways and I hope I am able to do the same for others in the future. 

We saw the PA, Mary, at Pediatric ENT of Oklahoma today to follow up on Hudsyn’s ear troubles. My dad (Hoot), Hudsyn, and I drove to OKC last night after work and when we got to our room we noticed Huddy had a fever. I gave her some Tylenol and she slept well but when she got up this morning it had returned. By the time we got to her appointment the Tylenol had kicked in - she didn’t have a fever and she was ready to play! But when they tried to check her pulse, O2 levels, etc., she was not having it as usual. Then, when Mary looked in her ears she REALLY got mad and she and I were both sweating from the wrestling match we had while I was trying to hold her down. Her right ear looked great but when she went to look at her left ear (the one where the tube has been blocked) she said “Wow, there’s definitely an infection here! Look!” And when I did there was some major drainage coming out of that ear. Disgusting! She used a cotton swab to get a sample of the drainage to be sent to the lab and cultured. She later explained to me that the lab will use the sample to determine what strain of bacteria is present and what antibiotics work best against that particular strain. We should then be able to treat the ear infections with an antibiotic we know will work rather than guessing.

Hopefully the fever wont return and Hudsyn will start to feel much better now that all that junk is out of her ears. If not, we will be off to the doctor in Guymon tomorrow!

We go back to OKC Monday for her 4 month check-up with Dr. Smith who repaired her Palate in September and then back for an ENT check-up the next week. We are keepin the road hot but Hudsyn is being a trooper and comes up with funny new dance moves and stuff that keep us laughing every trip :).

Our princess has so many people thinking about and praying for her and we are so thankful for every single one of you!