October? October! October. October......

So......we had Sophia's meet and greet with the cleft palate team at University Children's Hospital today.

We drove down after Sarah got off work yesterday, and stayed with Sophia's Godparents, 2 of them, Kate and Greg! Who were nice enough to give up their room for us, we appreciate it more than we can express!!! Sophia woke up once, so sorry to the Godparents and their roomie for the 230 am wake-up call!! We were off this morning to be at the appt by 8:00am.

We got to Moos tower and met the secretary first:) Then we met with the audiologist to look into Sophia's hearing. They found that her eardrums are a bit flat, which indicates fluid build-up behind the ear drums, this doe not necessarily mean infection they stated, so that is good, but it does mean tubes. There was a debate about if the tubes should go in sooner than later and the later people won out, so hopefully her speech is not too impaired because of possible hearing loss/decreased crispness of hearing.

Then we met with the nurse practitioner to talk about how wonderful Sophia is as a baby girl, and lay out our family medical tree. Tanner's family has nothing and Sarah's family has the messed up teeth and tongues, and small mouths, and heart issues. Sarah tells Tanner since there are more in her family it increases the amount of times something can go wrong :)

Then we met with pediatric dentistry to get Sophia's picture taken and to talk about oral health. She was great with the lip spreaders in her mouth, just not cooperating with putting her tongue down so they could get a good shot of her cleft palate. They actually had to go up a size in the lip spreader things in order to get a clear shot, that girl has a big mouth (Tanner would say she takes after her mom, but....have you seen Tanner's mouth? it is not small ;) ) They said we were doing great with her oral care and that we could actually start using fluoride toothpaste with her now, so we will do that...maybe her breath will smell better now? maybe... :)

Then we met with the Speech/Language Pathologist, this is one of the people we were really excited to meet with before we went down. She talked to us about the importance of Sophia using the front of her mouth for speech right now since cleft kids like to speak with their throats, which leads to problems later after the repair. So, we are to encourage "w", "b", "m", "n", "h", "j", "d"....and other words to get her to use her jaw and lips/mouth to produce speech and not to encourage throaty vocalizations. We do not need to worry about starting her on a sippy cup or anything like that before surgery because there are special bottles/nipples she can use after surgery. She was worried about her hearing because they found that kids with less crisp hearing can have language problems later. But, they all talked about it in the meeting and decided to wait, so....

Then we met with the ENT MD, and he did not seem too concerned about her ears, so he said we could wait until the palate repair. I think he was most concerned about the two times of anesthesia she would have to undergo if she had the tubes placed earlier.

Then we met with the orthodontist, oral surgeon, and the peds dentist again. We found out the Peds dentist went to school with Sarah's Godfather, Ray, and that they have a satellite clinic in Brainerd across the street from BMC....small world! They all did not have much to add at this time, but were interested to know that Sarah was missing a permanent tooth, and has two teeth that are turned 180 degrees, so then Sarah had to get shots of her teeth taken! Did I mention that we were running late this AM and did not have time to brush our teeth, and we had coffee and half a scone for breakfast as we were running into the clinic, yeah those pictures are probably disgusting! BLAH!!!!

The we met with Dr. Christianson, the plastic surgeon who will be doing the actual surgery. Did I mention we love her? She is awesome! Very straightforward and confident, oh and she always gushes over Sophia! :) She was all set for sophia to have surgery in October, so that is what we are doing. We do not have a date as of yet, her scheduler will call us in the next few days to get it all set-up. She explained a bit about the surgery. They will probably not do a Z-plasty because she get enough tissue and what not for her to grow when she brings down the anterior portion of her cleft. Also, she stated that Sophia will be in the hospital 1-4 days, depending on Sophia. She will have arm splints to keep her from reaching her hands in her mouth and ruining the fragile repair. She will eat pureed foods for about 2 weeks either by spoon (not as recommended) or by the special bottle. She explained the risks, such as fistulas and whatnot, but also that they occur more so in revisions than in initial repairs.

We then broke for lunch, and Sophia finally got to sleep! She really needed to as she had not had her morning nap.

We came back and met with the head/director of it all, oh during this time the team we had met all got together to talk about her and her plan of care. So, the director gave us the synopsis, which is what I told you already. Oh and that she should see a dentist at age 1-2 years. Sophia slept through the meeting, and through the walk back to the car, and through being put back into the car seat, and for over half the ride home :) Like I said she was tired! It was a big day for our baby girl and she was such a trooper, only crying a bit 2 times and only for short periods, she did not care for the tongue depressor at all!!! :) They all loved her and kept gushing over her, they know how to get the hearts of parents ;)

Oh, and last night Sophia was showing off for her Godmother, as she kept rolling and rolling across the bed, would be moved back so she would not roll off, and then would repeat. This went on for quite awhile and was very amusing, she is just adorable and we are so blessed to have our baby girl!

Oh, and we have to set-up a meeting with a geneticists to have Sophia screened, and probably us too, because having a cleft alone is very rare and they could not agree if they all thought she had Pierre Roban Sequence. So, we have to get that set-up soon, as well as another audiology appointment.

On the Tanner home front and school, we are figuring everything out. Tanner could possibly get into MRI school in August for an evening and weekend program that last a year. So, we may just do that, or do Rad Tech and MRI, or just Rad Tech (I don't think it will be the last unless he does not get into the MRI program). So, we may or may not be moving to Brainerd now. We are praying for guidance and Tanner has a meeting with the Rad Tech Chair Thursday night to go over the schedule, to see if doing both would even be feasible. Right now, we are just praying for guidance.

Hmmmmmmm.......hopefully that answered people's questions :) We have a Pediatrician appointment on the 13th? of August for her 6 month appointment!!! CRAZY!!! Cannot believe she is almost 6 months! Where did the time go???

thank you for your continued prayers!!!!!

Will post a picture of her in the waiting room soon as I get it uploaded!