Just an introduction from this newbie…I am Danielle.  I am 33 yo and live in Texas.  I have 5 children and am currently expecting #6 in January.  Dh is Isaac and the kidlets are …Marisa, 13; Jordan 10; Christian 9 – HFA; Adrian 7 – PDD-NOS; and Dominic Francis.

Our story starts in 2001.  We had our fourth child in January.  We thought things were smooth sailing.  We had 4 beautiful children and I often thanked God that my children had no medical issues.  Well, that was about to change.

Adrian was born at home and since he was healthy, I did not rush to take him to see the doctor.  I noticed there was something odd about the shape of his head and did not like the way hats looked on him.  I thought he was just odd.  I took him to the doctor at 8 weeks and the doctor noticed his head shape right away.  Otherwise healthy, the doc sent Adrian for xrays of his head and called me later to tell me Adrian was born with dolicocephaly.  I went online like we all do when some weird name is associated with our children.  I found a wonderful website, but it sure scared me.  I saw surgery mentioned over and over.  I found that dolicocephaly was also, but more commonly, referred to as sagittal craniosynostosis.  It meant that he had no soft spots where they are supposed to be.  His head grew oblong like a footbal because it could not grow round.  So, basically the bones in his head had fused prematurely.

Well, the doc gave us the info and sent us to a neurosurgeon in the area.  In the meantime, I joined that website and ended up with a support buddy who had been through the surgery with her son.  We met with the doc and he spke about a surgery to remove the fused bone and put him back together.  There would be no reconstructive surgery to fix the shape of his head.  We set a surgery date in May of 2001. 

While we waited, I met irl this woman and her son who were my support.  She spoke of a great team of doctors who had done her sons surgery.  I was so impressed I got the phone number and called the office.  I asked them if they took our insurance and they did.  I was going on the notion that if God meant this to be it would work out. 

I poured out my story to the lady who answered the phone.  I told her we were within a few very short weeks of surgery, but I wanted Dr. G to see him for a second opinion.  She did the unthinkable…she set us up for an appmnt within a few days.  Let me say that when you see specialists, generally, you wait months (or atleast weeks) to get in to see them.  It had taken us over 4 weeks to see the other doctor.

We met with this new doc and I had pages of questions written out on my legal pad.  Basically, the surgery he performed was in cooperation with a neurosurgeon.  He was a craniofacial specialist (read: reconstructive surgery).  The neurosurgeon would remove the fused bone and then Dr. G would come in and take out the back 2/3 of Adrian’s skull and break it apart.  He would then put it back together in a round shape with absorbable plates and screws.

I talked openly with this doctor about our appmnt in about 7-10 days and because of dh getting laid off and his severance package covering us financially for a bit.  We needed to get the surgery taken care of so I could stay in the hospital with the baby and he could take care of our other children.  Most docs would wash their hands of it and talk about scheduling difficulties.  Well, this doc went to his surgery scheduling coordinator and came back in a few minutes and told us that he could probably do the surgery the day before the scheduled surgery with the other doc.  Because of having to schedule 2 docs for the surgery, before we left we found we would have to wait a few days after to have his surgery.  It all worked out!!!  I was so relieved.

Well, I know this story has gotten long and I hope that I don’t lose readers, but there is soooooo much more.  One of the questions I had for this doctor was about the possibility of a second surgery for our son.  He said that most children do not require a second surgery.  He even gave me the percentage of his practice and it was low. 

Adrian had surgical followups within the next few months and it was determined that he WOULD need a second surgery.  Six months almost to the day, Adrian had his second surgery.  It was the week of Thanksgiving and we spent Thanksgiving in the hospital.  Dh had found another job and we were blessed for dh to have been able to work part time that week for the holidays and family helped out with the other children.  We had trays of turkey dinner in the hospital. We were so thrilled that everything had worked out.  We were told that NO ONE needs a third surgery.  We were quite happy with that.

Before Adrian had his second surgery, I had a few very nice ladies point out to me (online) that my third child Christian was maybe needing some diagnostics.  I guess I told a few stories about him that threw some red flags to some mothers of autistic children.  I called to have Christian eval’ed by a neurologist.  Well, that appmnt happened about 4weeks after Adrians second surgery.  Adrian was still swollen in his head from the surgery that day. 

I took all four children by myself to have Christian eval’ed.  Christian was already receiving services from ECI.  He was not 2.5 yet.  Before we left the docs office that day, he was dx’ed with pdd-nos.  That got me going.  I called a few places and made him some appmnts with some developmental peds.  He was never given the autism dx.  It seemed t me that most peds were afraid of hurting us and were very happy to leave his official dx with pdd-nos. 

I was unsure of having him evaled by the sd.  We were hmeschooling at the time and I was sure he would be fine at home.  By the time the summer ended, I had changed my mind.  I contacted the sd and set up evals.  When we met with the psychologist, I was aware that I might need to convince her that I knew he was autistic and I could handle the dx.  I took the diagnostic criteria with me and pointed each one out to her and how I was sure that he had enough t dx him with autism.  We left the school that day with a dx of High Functioning Autism.  

I think that may be enough of an intro for today.  There is so much more.  There is the fight we had with the sd and that we went through mediation with them.  There is also our son Adrian being dx’ed with pdd-nos the next year.  That will certainly come later.  I am glad to be here and I hope that I can post enough.

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