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Saturday, November 21, 2009

Long Overdue Update

Since September it has been extremely busy - Megan did have her tonsils out on October 7th. Procedure went great - recovery was rough. Two weeks of being up to suction Megan almost did me in. I was so tired I was crying on her bed and moaning ' I just want to sleep'..... very glad they are out though. They were so infected for so long. Within days Megan looked healthier and more like her old self. By the time her third birthday rolled around on October 17th she was almost all the way healed up. On Oct. 25th there was an awesome birthday party for Megan that raised about 8,000 towards the irrevocable trust fund in her name to help with all of the extra expenses that go with a medically fragile child. Once you turn three the Early Steps/Early Intervention services like therapy are discontinued as they refer you to the public schools for services wile attending an appropriate school to meet your childs needs. In our case, Megan was denied services by the county schools due to her medical needs and the educational relevance of it at this time. I am not surprised, however, it leaves us with the cost for all of ther physical, occupational, speech/oral motor therapy as we have also maxed out our therapy limits under our private insurance. Independent Living arranged for Megan's PT and OT to continue for her with us private paying at the employee rate - I think like $37 hour for OT and $48 hour for PT. She sees both PT and OT 1-2x per week each so this discount is incredible. If it were not for them doing this we simply could not continue with therapy as she needs it even with the fundraiser. We would exhasut it too quickly and then it would defeat the purpose to run out.

It was quite an undertaking but it went off without a hitch. Alison Fernandez spearheaded getting it together and Margie and Joe Ferrantegennaro collected all kinds of goodies and supplies for the event and helped to sponsor it as well. Jimmy Ciacco supplied the beer, Doug Elliott hooked up the shrimp and Jeff Lupton provided hamburgers, hotdogs, sides, condiments, servers, and everything else you can think of that was needed to go along with all of it. Girl Scouts held a bake sale and had the big slide and bounce house donated by a family member. Bay Area Neuro clinic did massages and the proceeds also went to Megan. Merlin Entertainment brought the music and the Rhino. Everyone volunteered and cooked. Cant say thank you enough to everyone. We are very lucky to have such great friends and family behind us.

Megan got her first congestion in her chest since she got the trach. She is still fighting it and it is scary. Congestion can not go to her nose like it does on us anymore since her airway is no longer her mouth and nose - it goes to the chest. Back to breathing treatments through the day and chest pysiotherapy thumping - suctioning. May take her for a chest x ray since bronchitis is going around - pneumonia has crossed my mind several times. It started 10 days ago. No fever, but she never had a fever when she had viral pneumonia in January. Hoping that being on top of it so early it does not or has not turned into more. Her chest is a little tight to me. We started Zithromax yesterday since she had not cleared up as much as she should have.

And in the middle of the chest cold we finally started the Ketogenic Diet. She is responding well to the formula and feeds. Her blood sugar and ketones are good(checking each 2x daily). Seizure activity is dramatically reduced. We started on Sunday at 10pm by fasting. Arrived at the hospital Monday afternoon and Tuesday around noon she started feeds at 1/3 strength. On Tuesday we only had 4 seizures that I saw, 10 on Wednesday, 5 Thursday, 4 Friday and 4 today so far at 9 p.m. I almost feel like it is too good to be true because she has blown through so many meds and is currently on Keppra, Banzel, Clonopan and recently weaned off Topomax after two years and was having uncountable seizures - some days all day every 5-10 minutes and all through the night too. The mix of her seizures is also out of control. Absence, Tonic, Nystagmus, Myclonic Jerks and or Infantile Spasms, Complex Partial - those are what I can see and identify - there are things that I am not sure about altogether - could be or maybe something else? She has such mixed tone - floppy in the head and trunk, stiff in the extremities - stiff as a board when she wants to be. Like she will crack in half if you try to loosen her up. I am hopeful we will see good things with this for Meg. If I can just get all of her crying figured out - maybe it is from the seizures - it started about a month ago and is really bad. Mostly all day and her dystonia/writhing movements are constant when she is crying. Seems painful to move all that much with no purpose. Heartbreaking. This is the stuff that breaks me down and gets me depressed. I dont know what to do or how to help her. It makes me so sad, angry, disgusted -hopeless - feelings I dont have room to feel and do a good job taking care of her. I dont want the boys to see that either and it is hard to conceal. It eats me up. It is hard to balance the rest of my life when I feel like that and it is unfair to Ryan & James especially. I feel detached in some strange way like I am shut off somewhere and I dont want to be. I keep thinking that God has to hear her cry and me cry, and Pat and James and Ryan's issues too and help Megan most of all which obviously will help all of us. Hate to sound so down when the seizures appear to be improving but her discomfort has been really bad and hard to see. How can she be weaned from the ventilator and looking at getting the trach out by summer, having less seizures, have her infected tonsils out and be crying and in distress all the time now? How can this be? Something has to give. I wish I could, but how.

The boys are hunting until Wednesday which is giving me a lot of quiet time. They will come home for Thanksgiving and hopefully I will have some answer about what hurts her so much and how to help her so it will be a good day for us.

4 comments:

Colleen said...

I am so sorry she seems so uncomfortable...I hope they can figure out what can help with that. Hope the congestion goes away soon! Hope you are able to enjoy the holidays!

Bettybmg said...

Heard today on Joel Osteen Sunday morning show about Breaking Barriers. He spoke about a little girl with severe autism who couldn"t communicate or "do anything". At age 7 doctors and everyone were telling the parents to put her away in a facility. The parents refused to give up on her. At age 11 she started typing and said I know I have autism but it does not have me. Thank-you for not giving up on me. She even has a good sense of humor, said her little brother stincks so bad that even skunks run from him. At age 14 she is writng a book. Know that we love you guys,pray evey day for all of you and lift your entire family up to God to give you the strength you need. Betty,Laura and family.

Rox said...

If the City tells you they do not have a place for your daughter in a school system, then they must provide you with services what you will need for your daughter in a home setting. If they don’t want to give it to you then fight the board of education and threaten them with, IDAE Individuals with Disabilities Education Act, then they will have to give you the services you daughter needs .

Glenda said...

I am glad to hear that the diet is helping. Lilly has been on it since July. We saw a gradual decline in seizures, from about 15 a day, then 4 a day, then 2, and now one every few days. It appears to continue getting better over a period of time. Her doctor is beginning to wean her off Kepra over a six week period. Then hopefully, the Trileptal.
Lilly also has periods where she cries for no apparent reason. We don't know if it's seizure related or just that she is so tired and never seems to sleep much. She usually goes to sleep about 11:30 and is awake about 6:00 a.m. and takes no naps.
I agree with "Rox" that the school district must provide at home services when Megan reaches three if she is unable to attend school. You should check with an attorney. I know here in Texas Lilly will still continue to receive services at home after age three, switching from Early Childhood Intervention to the school district. I believe it's a federal law.
I hope Megan's congestion gets better and I will pray for you both.
Glenda Sandlin (Lilly Grace's grandmother)
www.lillyrucker.com