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 :) 

And the blows just keep coming!

We have had quite a roller coaster of events happen again. Braylees left cast has been slipping a little bit and we called her Dr. Last Wednesday to see if we needed to get it replaced before we headed down to Oklahoma for a wedding. They said if I can keep pulling it up and it would stay on  and not bother her then it should be good until we go in for her check up.  Well during the trip it progressively started to slip more. As of this morning it was almost completely off and seem to be bothering her a little. So we ended up taking her to the ER. Apparently they can't do casts in the ER nowadays so they ended up putting a hard splint on her instead. This should protect the pin in her thumb until we go back for her check up in Salt Lake City in 8 days. 
We just can't seem to catch a break and we so need one!!
But on the bright side her fingers looked great!! They weren't oozing and they had a great color to them. She was so excited when that cast was off, and she was VERY upset when they put the splint on. She is ready to be done with the casts. And I don't blame her one bit. Hopefully things will start turning around and we can go back to our "uneventful" lives..... we really do miss those days haha ;).

She really wanted that gauze off

A finger :)

Her new splint

Looks good :)

Bad bad night :(

Well last night I ended up taking B to the clinic in town. She was wheezing and retracting really bad even after 4 breathing treatments within 5 hours. There they took a chest x-ray, and thought it looked like she had pneumonia. So they sent us up to the hospital in Jackson.  We arrived at 5:30 a.m. and found out her chest x-ray was clear but the Doctor was really concerned with her breathing so they gave her yet another breathing treatment and decided to admit her.
One if her pediatricians wants to observe her the rest of the day and if she keeps improving with just breathing treatments and just room air then we will most likely be going home this evening. If not then we will be staying the night.
Poor thing just can't catch a break :(

Discharged 9-10-13

Braylee has been discharged. Now the 3 1/2 hour drive home!! Let's hope it goes smoothly!!  Thank you for all the prayers and well wishes!

Successful Surgery!!

Braylee's surgery was a success.  Her right hand has been separated between her middle and ring fingers and her left hand has been separated between her index and middle fingers.  Both thumbs were straightened.  Turns out her thumb joints are the only "normal" finger joint she has.  All of the joints on her other fingers functioned poorly.  So her Doctor said it is safe to say she will never have a complete or normal range of motion. She is in full arm casts that go up past her elbows.  She will be in these for a month until we come back to have our post-op appointment.  Her doctor took pictures of what she had done before they put the casts on so we at least have an idea of what they look like.  It is going to be a very challenging month with her not being able to play with her toys or feed herself but we will figure out a way to keep her happy about that. She is still really drowsy and just wants to be held by Mommy or Daddy right now.  The goal is to just keep her comfortable and pain free. 

In surgery 9-9-13

Braylee went back into surgery at 8:45. They anticipate it to take around 4 hours. Please pray for our baby girl and her doctors.

9-8-13Hands surgery tomorrow

Braylee is scheduled for her hands surgery at 8:30 in the morning. She is admitted to the hospital tonight. Her anesthesiologist wanted a sleep study done on her tonight. We are very anxious about this surgery and how she is going to handle not being able to use her hands for awhile until they heal up. But on the bright side at this time tomorrow her hands will not be completely webbed anymore! 

She got her first tooth on the 5th! Exciting news for this household! 

Eating some pudding and getting ready for bed!

Go Pokes!

Discharged 8-23-13!!!

Braylee is doing so well her Doctor decided we don't need to stay the night, so off to the hotel we go for the night!! So exciting to leave early!!

Surgery was a success

Braylee's surgery went great. What happened was her plate from her cranial reconstruction started to fragment and it made her  bone curl up and a screw flip around. So that is why it was pointy one day and just a bump the next. Her surgeon removed all of the fragments, screw, and ground her bone down. She is doing amazing and is getting some milk and yogurt. She is feeling good enough to give her sister some hugs and to play her catch me game where she just throws herself back. We should be going home in the morning.

In surgery 8-23-13

Braylee went back into surgery at 7:35. They anticipate it to take 1 hour 45 minutes. Prayers please!!

The little things in life!

Well it is going to be a very busy couple of weeks for the family.  Braylee has her surgery on August 23 and she is now rescheduled for her hands surgery at Shriners Children's Hospital on September 9, 2013.  She is so ready to walk but hasn't gotten up the courage to just go yet.  We sure have enjoyed not having that helmet!  She wakes up with bed head instead of helmet hair. She can now wear her own sun hats instead of having to wear Daddy's hats over her helmet! Sometimes it is the little things that can make you oh so happy!!!

 

Sister shared her pudding!

 

 

Sun hats YAY!!! 

 

Sister love!

 

 

Happy, Happy!! 

No more helmet.....but

BRAYLEE IS HELMET FREE!!!!!  We are so very excited about his milestone!  Her doctors think her head looks great and are happy with the shape of her head! 

On another note B has had a spot on the side of her head that sticks out.  We asked her Dr. about it a couple of months ago and he said that it feels like a bone and  that if it gets worse or doesn't go away then we will have to do something about it.  Today he felt it and said "WHOA that is sharp, we need to do something about that right away!"  So Braylee is scheduled for ANOTHER surgery for August 23, 2013.  He isn't quite sure what he is  dealing with until he gets in there, so he is planning on making an incision on her previous incision and scoping down to the bone and hopefully scraping it down.  He thinks he is going to have to shave her head again :'( we hope he can just cut a patch or something but probably not likely.  Cancel one surgery and get another one booked....just our luck :(. But we want her to be as healthy as can be so if another surgery is what it takes we will do it. 

 

 

Bye Bye helmet!!!!

 

Front view of her spot

 

Side view

Some little bumps in the road

Braylee had her 1 year check-up today and unfortunately her Dr. found an ear infection with a ruptured ear drum.  Her surgery for Monday has been cancelled.  We haven't gotten a new surgery date yet but hopefully will have one within the next couple days. 

Today at her check-up she weighed 19.12 lbs (41st percentile) and is 30 in. tall (73rd percentile).  Her Dr. said she has hit all of her milestones and couldn't be happier with her progress. 

We are still hopeful that on Friday the 9th she will be done with her helmet!! 

 

 

 

CHEESE!!

 

 

 

Such a happy little girl!

 

 

Pebbles! 

 

Spitting image of her Daddy

 

 

What...I'm not doing anything!