Hailey R.
Illness: Craniosynostosis,Sleep Apnea, Seizures
Theme of Quilt: Teddy Bears
Biography
Hailey's Craniosynostosis Journey,
When Hailey was diagnosed with Cranio at four months of age, my husband and I
kept it mostly to ourselves, only a small handful of people knew about it. Quite
honestly, I was scared to death and wondered, was it something I had done.
during my research on cranio, I discovered how important it is to select the
qualified surgeon team to perform the surgery and remember seeing that if the
surgery ...did not go well that it could result into yet another cranio surgery.
remember thinking at that time, my god, how awful!! I couldn't imagine it, yet
here we are :( and while it's been a long journey getting here, here is her story.....
Shortly after surgery on July 7, 2010 I developed a very strong sense that
something was not right. My family members and your doctors kept telling me how
beautiful you were and that everything was fine, and you were beautiful!! In
August of 2010, I had requested an appointment for you as things started to pop
out the top of your head. I was told that it was just your bones adjusting or
hat maybe more sutures had closed.... later to find out, it was the start of
our brain trying to grow and it started to push out the top of your head.
I frequently took you to see your pediatrician who kept track of your "No"
circumference growth and in November, your surgeons requested a CT scan from
your no circumference growth. Your CT showed that you should be able to grow in
circumference and that they would keep you "on the radar screen". I then started
to reach out to anyone that would listen to me to try to find out what was occurring.
In November you were taken out of state and then
again in February to another specialist, with still no answers and still no
circumference growth. In March another CT scan was completed on you and we were
told that more sutures had partially fused shut, both Coronals and Saggital. In
April of 2011, a sleep study was performed on you and you were positive for
sleep apnea presumed due to your no circumference growth because your cranial
vault was not expanding that your nose/eye regions were/are not able to expand as well.
In May of 2011, you started developing starring spells that I could not
bring you out of, this is being considered seizers, and as your new doctors
think that this box of issues will go away as soon as you are reconstructed with what you should have been".
In May of 2011, we finally found your answers!!! While your father and I put our
trust in your surgeons we never in a Million years thought to ask about the
items" being used to fix your Metopic suture. It has since been told to us by
three top craniosynostosis specialists that they all believe this to be the
culprit of your no circumference growth. One specialist was appalled at the
thought of these items being used. While your brain continues to grow, it's only growth has been up.
In May of 2011, you underwent direct Inter Cranial Monitoring and we were told
your neurosurgeon at that time that he had never seen anything like it. Your
forehead was very thin and while it never expanded it also never had the chance
to mature and in the event that they would try to fix it they feared it would
completely shatter apart and would be of no use. It was also said that their
belief was that you would Never grow like a normal child should/would. While we
needed time to get over our shock, we continued to push on.
We have been blessed with your current Neurosurgeon and Plastic Surgeons!!!
They both have stated that while your "box of issues" will greatly improve and they
will reconstruct your cranio vault and face to be what "it should have been"
They are not at all worried about your forehead bone shattering because they
won't need it. Your current plastic surgeon is renowned from his past experience
separating bone, splitting apart layers of good bone in your head, to use in
replace of your forehead. While he is hesitant and worried about doing a rib
cage bone graft in the event there is not enough bone to properly fix you with
due to a scar we are more than willing to allow a rib cage scar to allow you
the chance at normalcy and proper brain growth!
While this procedure has not been performed often, I have an overwhelming of
other Instincts of, Finally, we have found your answers and you will be ok.
our father and I will never have to worry again each night as we lay you down
to sleep if it's the last night we will see your smiling face, nor will we have
to stop you while rough housing with your sister in the event that you might hit
your head, we will not have to worry about Chiari or Inter Cranial Pressure,
while you were due for your inter cranial pressure next month and for this,
any, Many thanks to the surgeons willing to take on this task of yours!!
So Please keep Hailey in your prayers and this time around, I ask for your
strength in getting through another Cranio Journey again!!
To stitch a square for Love Quilts you will need to join the yahoo groups to see the listing of patterns that are already being stitched. It is an open group so you can sign up easily and view the patterns right away. Once you are a member you wont have to sign up again, just sign in and to make it easier yahoo allows you to stay signed in for 2 weeks at a time! Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern of your own that you want to stitch and have confirmed it is not already being stitched by viewing the pattern listing on the yahoo site, please link below to formally sign up for a square. If you have any questions about they yahoo groups please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Welcome Friends!
"THANK YOU"
Thank you sooo much for Hailey's quilt! She loves it!! Very much
appreciated more than words can say!
Tricia Reuter
