Worst day so far.

Today was the longest and saddest day so far. We started with our first appointment at 9:30. Just a little blood draw nothing major. She cried for a second. Well by the time we got back out to the waiting room her two band aids were covered in blood She wouldn't stop bleeding. :( She got to pick out a little elmo ball which she loves. 10:30 was her shot of Procit. Not bad just a little cry again. I talked to the nurse a little about some concerns while Renae is in the hospital. Breastfeeding, sleeping. Things like that.

Now to sit for and hour and half and wait for her eye testing. This was the sad part. Little girl is already so tired and wore out. First they put an eye patch on one eye and held some flash cards, no biggie. Shes still happy at this point. Same with the next eye. I'm pretty sure when they took the sticky eye patch of they took her little eye brows too! Now on to the hard part. They put these little patches on the back of her head with gluey stuff hooked to wire to a computer, then one on the front of her forehead then a clamp on her ear. All while having the eye patch on still. Shes screaming, moving every where. Just not happy! They made her look at the flashy light on a screen 3 times in sets of five mins. Then on to the next eye .She is still screaming and all the nurses kept saying was, "man shes strong"

After all of that they put drops in her eyes and make us sit for at least 30 mins till the Dr is ready to look. She is just calming down when he comes in. Now he makes her made again by looking into her eyes with lights and all these things. Poor kid! He said everything seems fine but they have to wait for the electronic one to be read. SO hopefully all is good.

Next big outing is the dinner on Saturday! Hope to see you all there!

Appointments and benefit dinner

Well this week is a crazy week. Just 2 weeks till Renae's surgery. Tuesday we have a blood draw at the lab, shot at the drs, and a eye appointment which they said would take a few hours. What a long day. I don't want to take her out in the cold but it's not like they will come to her lol. This coming Saturday is are benefit dinner. Every one has been working so hard to help us. Bobby, Renae and I are so grateful for that!

The Spaghetti Dinner Benefit will be held at the Lake Milton American Legion (16365 Milton Ave, Lake Milton, OH 44429) from 1:00 to 6:00 PM. Admission for Adults is just $8 per ticket. Admission for Children 12 and under is $5 per ticket. 3 and under are free!

Organizations like Girl Scout Troop #80244 and the Lake Milton Browns Backers have already pledged their support, but more help is needed to help pay for Renae’s treatment. In addition to donations, we are asking for raffle prize donations to be auctioned off at the benefit and any other help you are willing to give..

Hope to see all our family and friends there!

I will try and blog a little more since we are close to the surgery and there is so much more going on.

Missed post from last week.

Just a little update. Renae's surgery is less then 3 weeks away now. This past Monday she started her weekly shots and blood draw that she needs clear up to the week of surgery. 

This coming week we have 3 appointments she has to go to. She started taking Meds twice a day to help her shots work better. Poor little girl. She is taking this all so well. As you can tell from these pictures taken a few hours after we got home.

Bake Sale

We are scheduled to have our first fundraising event this coming weekend. October 27 from 1-4 maybe five if we are doing food on sales.

It's a BAKE sale at Once Upon a Child in Stow. Which just happens to be my favorite kids store lol.
There will be lots of great cookies, cupcakes, pies, candy ect. Please stop out and see us for this great cause. If you would like to help out and bake or just sit and sell with me please let me know ASAP.

We are also in the process if planning a spaghetti dinner/ raffle fundraiser for the week before her surgery. We already have a few baskets and donations for that event, but once again if you would like to help with that please let me know.

Thanks for reading!

Surgery date!

We had our two month follow up with Dr. Pantel yesterday. He measured her head and said that she is growing as expected. We discussed her milestones which she is hitting them all on time. He asked if we had any more questions since we had a few months to think about things. I asked him since this could be genetic,  what that means for our future children and Renae's children. He said that 1 in 2000 children will get some form of this but now that we have already had a child with it that we now have a 1 in 50 chance. The same with Renae's children. 1 in 50. 😞  He also said that the shots he wants to start giving her a month before to help increase her white blood sell count is still waiting for approval from the pharmacy. They use this for other surgeries at Akron Children's but never for this surgery. So approvals every where for it. He's not worried he said it will be approved by December for her. We scheduled her last follow up for mid December.

 They called the next day with the surgery date.

January 20th at 8am!! 

Seems so close. Least it's after the holidays! 

As many of you know I have been selling my homemade pumpkin rolls and putting the profit towards her surgery. I have made a little of 40 of them! Got at a least 10 to make today!! So if you want one please message me. They are $10.

Hopefully Bobby will be setting up a bank account this week to put all the donations and money we have been getting from these pumpkin rolls in there. Once I get that info I'll pass it on to you guys.

Well that's it for this blog! Thanks for reading!

Neurologist

 We met with Renae's neurologist yesterday. It was a quick visit, other then they forgot to put us on the schedule. They did all the typical stuff, weighted her 17lbs 4ozs and she was 25.10inches. Which means at her 4 month appointment with her regular Dr. they measured her wrong because they told me 27.7inches.

  When the Dr. came in she just looked at Renae's head and said, "Yep she has it". Well ok we already knew that. She only said a few things that the plastic surgeon said.  It was a in and out visit. She said we won't see her again till the morning of the surgery.

  We would of been able to schedule it yesterday but the surgery scheduler was on vacation. So they will call us next week with the date.

  I was a little upset that this visit seemed pointless, but Bobby reassured me that this visit was just to MEET her. So I guess if that was it I'm ok with that.

  The next step will be setting the date. Then in 4-6 weeks we will go back to the plastic surgeon and he will see how she is coming along.

 That's all I got this time.

  Thanks for reading everyone.

What is going on?

  
  I'm starting this blog to keep our family and friends updated with Renae's doctor appointments, essentially so I don't have to answer the same questions over and over again.

  As some of you may know Renae had a doctors appointment the other day to look at the point on her forehead. I noticed around two weeks after she was born that her forehead looked pointy. When I mentioned this to her doctor he said this was normal and when her skull fused it would get better. Well, at her two month check up same thing, but this time he mentioned  the name craniosynotosis. He gave me an explanation of what it was and said keep an eye on it. Of course you know I went home and looked up everything I could!! 

   What is Craniosynotosis? 

Craniosynostosis is a birth defect that causes one or more sutures on a baby's head to close earlier than normal.
The skull of an infant or young child is made up of bony plates that allow for growth of the skull. The borders at which these plates intersect are called sutures or suture lines. The sutures between these bony plates normally close by the time the child is 2 or 3 years old.
Early closing of a suture causes the baby to have an abnormally shaped head.

Causes

The cause of craniosynostosis is unknown. Genes may play a role. However, there is usually no family history of the condition.
A form passed down through families (hereditary) can occur with other health problems, such as seizures, decreased intelligence, and blindness. Genetic disorders commonly linked to craniosynostosis include Crouzon, Apert, Carpenter, Chotzen, and Pfeiffer syndromes.
However, most children with craniosynostosis are otherwise healthy and have normal intelligence.

Symptoms

Symptoms depend on the type of craniosynostosis. They may include:
No "soft spot" (fontanelle) on the newborn's skull
A raised hard ridge along the affected sutures
Unusual head shape
Slow or no increase in the head size over time as the baby grows
Types of craniosynostosis:
Sagittal synostosis (scaphocephaly) is the most common type. It affects the main suture on the very top of the head. The early closing forces the head to grow long and narrow, instead of wide. Babies with this type tend to have a broad forehead. It is more common in boys than girls. 
Frontal plagiocephaly is the next most common type. It affects the suture that runs from ear to ear on the top of the head. It is more common in girls.
Metopic synostosis is a rare form that affects the suture close to the forehead. The child's head shape may be described as trigonocephaly. It may range from mild to severe. 

Treatment

Surgery is done while the baby is still an infant. The goals of surgery are:
Relieve any pressure on the brain
Make sure there is enough room in the skull to allow the brain to properly grow
Improve the appearance of the child's head

References

http://www.nlm.nih.gov/medlineplus/ency/article/001590.htm




 Now that brings us to her four month appointment.  Once the doctor came in he asked how things were, I told him I thought Renae's forehead was getting worse. He took a look at her and agreed with me. He recommended that we take her to see a plastic surgeon to see if this was effecting her brain or not.

  Bobby called and made the appointment right away. Due to a cancellation we were able to take her the next week.   Once we got there they measured every part of her head, every which way. He then continued to tell us, that yes she does have craniosynostosis. More specifically Trigonocephaly Metopic Craniosynostosis. He said Renae was born with this. There are a few reasons this could happen. But there was nothing that I could of done to prevent it.

 What is trigonocephaly metopic craniosynostosis: 

Metopic synostosis is a rare form that affects the suture close to the forehead. The child's head shape may be described as trigonocephaly. It may range from mild to severe. 



   Her doctor sat there with us for almost 2 hours explaining this and what we were going to have to do. He explained that the best time to do surgery was between the ages of 8-10 months. So this January or February little Renae will be having surgery on her skull. Due to skull being already closed it is causing it to grow weird and could be putting pressure on her little brain, which down the road can cause all kinds of brain issues along with hearing, breathing and seeing. 

  Now an explanation of the surgery. He said that what they will do is start giving her shots that will help increase her blood so that when they do the surgery hopefully they will not have to do a blood transfusion. The reason being is that 90% patients receiving this surgery do need a transfusion. Once it comes time Renae will be in surgery for up to six hours( Not all of that is surgery. There is prep time and recovery before they let us see her.)

  From my understanding they will put her hair in little pig tails all over so they don't have to cut any of her hair, which is very nice. They will make a squiggly incision also so that her hair part will not grow funny. The neurosurgeon will then cut pieces of Renae's skull so that the plastic surgeon can re-piece them how he wants. They use stitches and little plastic plates that will dissolve. She will be in the hospital for three to five days. They said hour 36 is the worse. Her little eyes will be swelled shut. They will be swelled shut for three- five days, however at this age her nerve endings are not as sensitive as ours so they feel less pain. They will send her home on Tylenol and stronger if she needs it. 

  There are a lot more details but I'm tired of typing today. I will give more details as they come. 

We meet with the neurosurgeon today. So I will post in a few days how that goes.

Thanks everyone for reading. 

References

http://www.nlm.nih.gov/medlineplus/ency/article/001590.htm