Just another hurdle

So about a month and a half ago we did an at home "sleep study" which was just with a pulse ox to measure her SAT's.  The results from this made her E.N.T. want a more in depth sleep study and for her to be put on oxygen at night.  We finally got the study done last night.  She did really well getting hooked up with all of the wires and stuff, there were around 26 of them!!!  Once she got hooked up she fell asleep rather quickly and surprisingly she stayed asleep.  She did have one of her episodes (crying out) last night, which was good because then they could tell us  exactly what was going on.  We went over the results with the pulmonologist this morning and didn't quite get the news we hoped for, but in the back of our minds knew it was coming.  We found out that she has severe obstructive hypopnea. Obstructive hypopnea is a partial blockage of the upper airway.  Which with her narrow airway makes it really hard for her to breath while sleeping.  She is working really hard all night long to get the air that she needs.  She had central apnea once (completely stopped breathing) last night and that lasted 13 seconds, which the doctor wasn't worried about that.  Her REM and deep sleep are normal which was good to hear.  Her REM was just shorter periods than they would like.  She will be starting a CPAP machine when we can find an at home health care place that will get us one for a child under 66 lbs.....seems to be harder than you would think here in Wyoming.  Hopefully we can get it all worked out tomorrow or by the beginning of next week.   So a lot to digest but once we can work it into our  routine and get her used to it, it will all be good and she will get a full nights sleep for the first time in who knows how long! Just one more hurdle to get over but she can handle it and will rock it like usual!

Braylee and her sister Charlee received their capes from tinysuperheroes.  They love them!!  Braylee loves to wear hers around and put her arms back and fluff it out.  She wore it around the doctors office today and got so many compliments on it!    Tinysuperheroes seeks to empower Extraordinary kids who exemplify strength and determination by overcoming illness and disability. Their website is www.tinysuperheroes.com you can sponsor a tiny super hero or buy one for a superhero you know.

Getting all hooked up.

All hooked up

Super Braylee Rae and her sidekick Charlee Mae

HI!!

Such a pretty little girl :)

waiting for her results

New fingers coming soon!!!!

We had a very good trip to Salt Lake City for Braylee's appointments today!  Nothing but good news along with a surgery date.  We started off with a visit to Shriners Hospital for Children for to see her orthopedic surgeon for her hands and feet. Her hands have healed up so well and her doctor is happy with her progress. We have scheduled her next surgery for another finger release for May 12, 2014. Here they will be separating the rest of her fingers on her right hand so she will have 5 that's right FIVE fingers!! HOORAY! For her left hand they will be releasing her middle and ring fingers so she will have 4 total!  We are so very happy that she will get to have 5 fingers but we are really not looking forward to having her in those casts for 3 weeks. But it will all be worth it in the end! :)

Waiting for her appointments

Such a pretty girl

Her next appointment was for her feet.  All looks good there!  She had an x-ray done on her spine to see if her kyphosis (curvature of the spine)  was getting better.  Thankfully it is almost completely resolved!!  We will still have to keep an eye on it but the prognosis looks good!  So we will just keep going with our 6 month check-ups so they can stay on top of her case and catch anything if it happens.





Her last appointment was for to see her pediatric dentist.  He said her teeth look just like any other kid her age but we will just keep an eye on it when more start to come in.  Since her mouth is so narrow her teeth are most likely going to be really close together so she has a higher chance of cavities since it will be harder to clean.

It was a very good day!!!

Happy ONE Year Cranioversary!!!!

It is really crazy to think that it has already been a year since Braylee had her cranial vault reconstruction (CVR) . It was one of the scariest days of our lives, having to hand her over to her anesthesiologist and watch him walk with her down that OR hall to have the top of her skull taken off, broken, and put back together. We waited for 5 hours for her surgery to be complete and thankfully everything went as smoothly as possible.  And one year later her sutures are still open like they should be and her head is growing just like it is supposed to. Her beautiful blonde curly hair has grown out so much that she can have full pigtails :)!!

Look at those curls on that perfect head !! :)

  

Scar 1 year later

Pigtails!!! :)

At her 18 month check up she is a whopping 22 lbs. 5 oz (47th percentile), 32 1/2 inches tall (74th percentile), and her head is right where we want it to be at  47.4 cm which is in the 80th percentile!  Growing little girl. :)

Braylee is a walking fool now.  She is just go, go, go and getting into everything. And guess what?? We will take it!!  When she was born we didn't really know if she would be able to walk with her webbed feet and if she did we didn't know how well.  But as usual she isn't letting her disadvantages hold her back.  She may not talk as much as another 18 month old but she can still say a few words and she understands EVERYTHING that we say.  We can ask her to go and get something or to do something and she does it.  It is so great to "see" the little wheels turning in her mind as she processes what she needs to do.  She is a smart little thing.  One of the many reasons we are so grateful for her CVR so her smart little brain can continue to grow!  As for the talking, that will come in time.  She is learning new sounds everyday since she had her cleft palate repair in May 2013.  Soon she will be jabbering away and giving her sister a run for her money on who can talk the longest......that shall be one heck of a competition.  She will be starting early intervention speech therapy on January 24.  We don't know what all this entails yet but we will know more then.  She is learning to sign more and so far can sign "more", "please", "all done","milk", and we are working on trying to figure out new signs for certain words due to the limitations to her fingers and hands.






















She amazes us and everyone else around us with what she has accomplished.  She is a determined little thing and always has to try to figure out how things work....may end up being an engineer just like her Daddy. :)

We go see her orthopedic surgeon for her hands and her other orthopedic surgeon of her feet on February 3, she also gets to go have her first visit with her pediatric dentist that day.  We are so happy to have found one in Salt Lake City who has a handful of other patients with Apert Syndrome and a cleft palate.  This will make things so much easier in the future with figuring out what all needs to be done. She now has 4 teeth and loving it!!  She runs her tongue across her teeth all the time, getting a good feel of those bad boys.

The classic terrified Santa picture.  

The year  2013 was one crazy year for this family and we are VERY happy that we made it through it happy and healthy.  Yes we had those times when Braylee went in for each of her 4 surgeries and we put her life in her surgeons hands and we were so scared, but each time it only made us stronger.  She proves to us each time just how strong she really is.   Braylee has touched so many peoples lives already and she is only 18 months old (as of tomorrow).  She inspires people every day and she doesn't even know it. She has taught us to take things one step at a time and not fret over the little things.    Being "different" isn't as bad as everyone comes to think it is.   It just makes you that much more wonderful.

And we are walking!!!!

I am just a tad bit behind in posting this blog!  Sorry about that!  Well we have had a great couple of months.  Braylee has started to walk more than crawl and is such a joy to watch walk around! She can push herself up from a sitting position to standing!  She has progressed so much, she amazes us everyday! Braylee now weighs around 22 lbs. (43rd percentile) and is 32 in. tall (89th percentile). She hasn't developed many more words yet but is just jabbering away and discovering new octaves haha!  We are going to be starting some sort of speech therapy here sometime.  We still have yet to go through all the details with the Speech Therapist yet but everyone is in agreement that we should start some early intervention here soon. We had a physical therapist come evaluate her a couple of weeks ago, just to see if there is anything we need to do to help her with balance or anything.  The PT was just in awe at Braylee and everything that she can do and has overcome.  At this point she doesn't think we need to intervene yet.  We will wait a little while and let her get it all figured out herself and then when she starts running around more, then we may add in something to help her stabilize a little better.   She is doing better and better in her occupational therapy.  She is finally letting the therapist stretch  and work with her a little more.  Just taking it one step at a time.

We went down to SLC on November 25.....see told you I was behind on my posts :).  We went to her Craniofacial Clinic.  This is where we see multiple doctors in one visit.  At this visit we saw her Plastic Surgeon, Orthodontist, a Speech Pathologist,  and her E.N.T.
Her plastic surgeon didn't really have anything new to say since we just saw him 2 weeks before that.  We just have our next visit with him in May to measure her head and make sure things are still growing in the right direction.
Her orthodontist was sad to say that we will be seeing a whole lot more of him here in a couple of years :(.  With Apert Syndrome the mouth and palate are narrower than usual so he is most likely going to have to do quite a bit of work to help her out in that area.  He recommended we get her into a pediatric dentist, preferably one that has worked with Apert or at least a cleft palate.  He we was hoping we could find one in Wyoming that is close to us but after making calls and talking to our local dentist, we have discovered that there isn't a pediatric dentist close to us in Wyoming.  So we will be going to SLC for that also.
The speech pathologist was very happy with Braylee's progress and agreed with all of the steps we have taken so far in helping her along.
Last but not least is her E.N.T.  Braylee had been having a little bit of draining out of her ear and the Dr. said that even if there isn't an infection at that point that we should get her started on drops because most likely one is coming.  So unfortunately  we started her on her drops then and am glad to say that has cleared up.

So there were some ups and downs to the appointment but the great part is still no surgeries scheduled or even mentioned to be in the near future.  We have so much to be thankful for this year and couldn't be happier with our little family!

She got her bangs trimmed

Good times in the snow, sledding with sister and a snowman!!

Love that little smile!

Good news my friends!!

Today's trip to Salt Lake came with really good news.
Her first appointment was with her ophthalmologist. Her eyes look great, she still has a little astigmatism but there is no need for glasses at this time.  As long as the random watering of Braylees eyes are getting better then we can wait another 6 months to see if they need to be probed. Just have to keep an eye on them and make sure things are still improving.

Her second appointment was with her plastic surgeon for a check-up from her temple surgery in August.  Everything looks great.  He measured her head and that all still looks good, there haven't been any drastic changes, so that is good! She has two soft spots or what he called pulsing spots on the side of her forehead that we need to keep an eye on and make sure they close, which could take up to 18 months. He wants to see her back in 6 months and we will take more measurements to make sure everything is still going in the right direction.

It was a really great visit that resulted in no surgery dates being set so YAY for us!!!! Both of her doctors couldn't believe how much she had grown :-). Getting to be such a big girl!!!

Rocking the sunglasses after she

got her eyes dilated

The bubbles are so cool at the

Doctors office!

Keep on keeping on!!!

Monday marked a month from when we got Braylee's casts off. It was a great day since we got to take her splints off! She is loving not having those in her way anymore.

She has been working with a occupational therapist every week and we are hoping to improve her fine motor skills.  As of right now her speech is still on track so we won't be doing speech therapy, at least for a little while.

She now has 2 teeth and is an eating machine!! She spends most of her day rocking away in her rocking chair "reading" a book or rocking her baby. :)  her little personality is really starting to shine through!

We head to Salt Lake City on Thursday for her August surgery check-up and to see her ophthalmologist. So hopefully everything is still on track with her eyes and we can have a nice break from doctors for awhile. :-)

Everyday we are thankful

Just hanging out reading a book

Such a happy girl

Ladies and Gentlemen we have fingers!!!

Today we went to Shriners Hospital for Braylee's post surgery check-up and she got her casts off!!!  When we pulled the splint off and looked down at her thumb we realized her pin was no longer in her thumb!  It ended up pulling out of her thumb as we took her splint off, which was good because it was less stuff that the Doctor had to put her through.  Her other pin just pulled right out, she didn't even really feel it which was great.  Her hands look SOOOO good and she has FINGERS!!!  We are so very excited about this.  They put her thumbs in a removable splint to keep them straight for the next month while they continue to heal.  She doesn't seem to mind them, it has to be way better than those casts!  . We were so surprised that she automatically started wiggling her new finger side to side, separating it from the rest.  She hasn't ever been able to do that so that was really great to see.  She is just so excited to be out of those casts! We talked to her Doctor about a timeline if they ended up separating another set and she said if that happens we won't do it for 9-12 months.  Below are some pictures of her fingers before and after :)  She still has some dead skin that needs to be pulled off but that will happen over time. Please ignore her ridiculously long fingernails that haven't been trimmed yet from her month in the cast :).



 

 

 

 

And of course her Sister picked out the colors for her splint :)