Good News Today

Joel loves being flipped upside down. (He craves that type of stimulation.) I love Joel's curls.

I got good news this morning. We got eight more respite care hours for a total of 24 hours per month. This is very helpful as it gives me more time to spend with the older boys. Maybe Isaac and I will even get a date or two each month. I also got a call stating that a request was put into regional center for them to fund Joel's autism evaluation. If that's approved the evaluation will be a lot sooner than if we go the insurance route. We are praying that God will open doors to show us the route we are to take. He is faithful in guiding us. Anyway, today we got new hope that there is a better way to get his evaluation payed for.

Joel had OT today and his therapist said that until he starts imitating he has plateaued. It makes sense because he has been working on the same thing in OT for about 6 months. So, would you please pray with us that he will start imitating. This is very important to his development. I want to say thank you to all of you for praying for Joel and for the encouragement you give me by reading my blogs and leaving encouraging comments. I can't tell you how much it means to me. It really helps me get through everything. So again, thank you.

The Geneticist

Sorry, I've been putting off this post because I don't even know where to begin. (I've kinda had writers block.) Last Thursday we saw the geneticist. She explained the results of Joel's DNA test. In very, very simple terms his TSC is a result of a deletion in the TSC 2 gene. This particular mutation has never been seen before (which simply means the lab who did the test has never seen this and it has never been reported.) There is no data bank with all the DNA test results from everybody, so it's hard to know if this mutation has been found before. It should be fairly simple to find out if Joel's TSC is hereditary, Isaac and I will both have to be tested. If either of us has the same deletion then more research will be done. If neither of us has it then Joel's case is spontaneous. The kids will not need to be tested until we know if we carry it, except she suggested having Jason tested at the same time as us since he has a couple non-pigmented spots (which can be a sign of TSC) and is having headaches. If he was ruled out from having it our minds and hearts could be put at ease. Now we come to the more complicated part...insurance and the effect testing us would have on insurance if any of us were found to have TSC. All three kids have CA Healthy Families. Everyone except for Jason is also covered by private insurance. Jason was on his own policy because he was a higher rate due to asthma when he was an infant. Jason alone was $200 per month so when he got the Healthy Families we thought long and hard (and prayed) and decided it was the best decision to cancel it. IF Isaac and I are tested and one is found to carry TSC than Jason would probably be uninsurable. Healthy Families will end at 18 (assuming we will qualify until then, which every year we are right on the border) and then he would be without insurance possibly with a disorder that requires a lot of routine expensive testing. So...we wait to be tested and in the meantime I am applying to get Jason covered with the private insurance again. Easier said than done. Jason already saw the neurologist who ordered the MRI. So as I am applying I have to reveal that he saw that specialist and they will request the records and then....will they not cover him until after the test is done? If not, what if he has TSC? Then he will be uninsurable. This is all so complicated and confusing and time consuming! Please pray that everything will go smoothly and that God will protect our little Jason and our family. Please also pray that during this time I will find a productive way to relieve my stress and that I will not worry. On top of everything else, the geneticist said she wanted Joel tested for autism. The dreaded "word." One third to one half of all people with TSC have some form of autism. The amazing thing was that when she said it I had two thoughts race through my mind, the first being "NO, NOT MY BABY! He has already gone through so much." The second thought that went chasing after the first was "Even if he has autism, he is the exact same baby I walked in here with and he will not change by me knowing." The geneticist said that he might as well be tested as he has some autistic features because there are many benefits he would be eligible for if he has the diagnoses. I can't deny that it makes sense, if he has "it" he may as well get the extra help and if I know he has it I can be working to do something to help him. The complicated part of this is that I called to make the appointment (which they are already booked all the way to January) and I must know that the insurance will cover it before I book the appointment. His private insurance will cover it but there will be a rather large cost to us. The healthy families will cover it IF I get an appointment with C3 (which is run by the hospital but I think it's state funded) to have him evaluated and get them to write a prescription without the word "autism" anywhere in his paperwork (this seems like it is going to be hard because if they evaluate him and see autistic features...which they will...they won't want to leave it out of their notes.) I called C3 today to get an appointment and they don't have one until the end of November, which means his evaluation at Children's won't be until at least March. I will be left wondering if my baby has autism for at least 6 months. I know it sounds selfish but this is torture for a mother. For Joel it means that if he does have it then that was 6 months missed that we could have been helping him. I hate the insurance system. I hate that I can't help my baby right away. Put all the things in this post together in the last week and it makes for a busy, stressful time. I think it's time for me to go open my bible for some encouragement.

My Climber

In August Joel started climbing. After a month of practice he's pretty good. It's a wonderful skill to have. For Joel it's great fun. For Mommy it's scary. (He gets hurt an awful lot.)

My 4 year old, Jason

This is my sweet four-year-old, Jason. Today Jason saw Joel's neurologist, Dr. Nespeca. (By the way, for anyone looking for a pediatric neurologist in the San Diego area, Dr. Nespeca is the best here.) Anyway, Jason saw Dr. Nespeca because he has been having a lot of headaches the last couple years. They have been increasing lately and with Joel having TSC there is a possibility that Jason has it as well. (TSC can cause non-cancerous tumors in the ventricles of the brain that can become a problem if they grow and block the flow of fluid. This could cause headaches which is why he needs to be tested.) I don't like to even think about Jason possibly having TS, but for his safety the possibility has to be explored. Dr. Nespeca said neurologically Jason is right on track, but because of the headaches Jason needs a MRI. This involves anesthesia which can be dangerous for little ones. Before the MRI appointment can be scheduled the insurance has to approve it, so the appointment will probably be about two months from now. I will let you know when we have an appointment date so you can be praying. I really appreciate all your prayers. It is only by prayers that we have made it through the last two years. Please pray that Jason's headaches will disappear and we will find the cause. Also, that if he is just pretending to have headaches to get attention, that we would have a way of knowing (it is so hard to tell with a 4-year-old, especially one who has a special needs brother who gets a lot of extra attention when he doesn't feel good.) The other prayer we REALLY need is that Jason would NOT have TSC and that I could stop worrying about my other children. I know that worrying is a sin and I try really hard not to but once in a while I have this nagging thought..."What if?"

Boo-boo

Earlier today Joel had his first 1 hour PT appointment. (Up till now he has had 30 minute appointments.) He did pretty good lasting 45 minutes. When we got home the whole family was out in the backyard together enjoying the beautiful day. Shortly after I took the photos of the boys below, Joel tripped on something and fell and hit his face on the cement. His tooth went all the way through his lip in the same spot it has twice before (so now it has happened 3 times in the past 4 months.) You can see the boo-boo on his chin in the above picture. He trips and runs into things a lot because during the surgery they removed the part of the brain that controls the right side of his vision, therefore he doesn't have vision on his right side of both eyes. Please pray that it will heal fast and never happen again. It makes my heart ache to see him get hurt (and he gets hurt a lot due to his vision.)

Brotherly Love

It's amazing how much love God has given my boys for each other. You would think that the two older boys would be jealous of the extra time I have to spend caring for Joel, but they're not. It makes my mommy heart overflow with joy when I see them together. Jonny and Jason are truly best friends and both of them love Joel with all their hearts. There is also a special bond between Jason and Joel (Jason loves playing with Joel therefore Joel responds to him.) I love the bottom picture. Joel is kissing Jason and you can see the love on Jason's face.

Energy and Patience

Wow, I was just looking at the coming week on my calendar. Joel has either a doctor appointment or therapy every single day (which means A LOT of driving.) Throw in the boys school, piano lesson/practices, and Jonny's birthday (my oldest son, turning 7) and we officially have a very busy week. Please pray that I'll have energy and endurance this week. On Thursday we are seeing the geneticist down in San Diego to find out what the results of Joel's DNA test mean. I have been thinking about this day since Joel was diagnosed, two years ago. Approximately 60% of Tuberous Sclerosis cases are not hereditary. We are praying this is the case with Joel. If it is hereditary that means either me or Isaac are carrying it which means Jonny and Jason would have a 50% chance of having TS. Depending on what the geneticist says on Thur. Isaac and I may need to be tested. Then we could go from there. But, I guess I am jumping ahead of myself. We'll have to wait and see what she says. Love, joy, peace, PATIENCE...I'll have to focus on patience until Thursday.

Strength

In honor of Joel's birthday, here is the second post. Joel has been through so much in his little life. He is one of the strongest babies I know to have made it through the past two years. He has a very strong personality that draws you in and makes you want to squeeze him with love and kiss his chubby cheeks. I want to share with you a sampling of what he has been through in the last year. In December 2006 Joel had about a quarter of his brain removed at UCLA Children's Hospital to try to stop seizures that no amount of meds (even mixed together) could stop. So far they have not returned as far as we know. (Warning: the following pictures are difficult to look at.)

11/06 Joel was bundled like a mummy for his MEG test in San Francisco. I was feeding him in an attempt to put him to sleep.

The MEG test. He had to hold completely still without crying for 30 minutes. You know how hard that is for a 14-month-old baby.

12/06 Joel has been poked and prodded way too much in his short life.

12/14/06 This picture was taken the morning of his surgery. My sweet baby had no idea what was coming, he just knew he didn't like hospitals.

Waiting for Joel's surgery was agony. I felt like I NEVER wanted to let go of him. Part of the agony: knowing that he would return to me without a quarter of his brain. The other part: not knowing what the future would hold for him.

Finally out of surgery, my baby was swollen and attached to all sorts of wires and tubes. One of the tubes was draining excess fluid out of his brain. I was not prepared for that particular tube, so you can imagine how shocking that was.

The day after surgery was difficult as his eye was swollen shut and he was aware of it as well as being in a lot of pain.

Four days after surgery I was finally able to hold him when the tube to his brain was able to be clamped. Before then his head had to be at a certain elevation due to the tube. It felt sooo good to have him back in my arms but was a little scary at the same time.

When the head wrap finally came off we discovered he had 43 staples.

I had to include this picture just because he is so cute sleeping with his teddy bears.

My little "tough guy" with daddy just before we went home the first time. You can see how swollen his head had become pushing his ear down near his neck.

This was just before we left for home the first time. I didn't think we were ready to go home but they insisted he was ready.

Our one good day at home in between hospital stays. Only one week after surgery he sat up,which he had only done a few times before.

After being home 3 days we ended up in the ER at San Diego Children's Hospital on Christmas Eve and he was life flighted back to UCLA on Christmas morning. (Needless to say, our last Christmas was not what I had hoped it would be.) After a lot of testing and waiting they decided he had Chemical Meningitis (which was his brain having a chemical reaction to the surgery.) It was extremely painful with high fevers. Very difficult for us to watch him go through. I would have given anything to take the pain from him.

Joel was in isolation most of his 2nd hospital stay because they didn't know yet what type of meningitis he had.

20 days after surgery we were back at home with a PIC Line for his meds. Being back together as a family in our home was just the medicine he needed to put a smile on his face.

Smile

In honor of Joel's birthday I wanted to make two special posts. Here is the first.

Joel rarely smiled before his surgery. One of the many wonderful results of the surgery is that he is more interactive, therefore he smiles more.

Joel's beautiful smiles: How could you not fall in love with him? ;-)

Happy Birthday, Joel!

“A very special little gift sent down from heaven above
sweetened with laughter, sprinkled with joy
securely wrapped up with love.”
~ Author Unknown

Our sweet baby Joel is two years old today and is doing better than ever!!! We had a family dinner to celebrate his birthday/life. Uncle Tom and Aunt Dori came. Great-grandma was even there.

After dinner Joel opened his gifts.

It took some work to keep him interested in gift opening.

Below, Joel is in deep concentration playing with a toy.

Joel loves to play with Aunt Dori!
Amy stopped by to see Joel. She is a very close friend of mine who
actually ended up delivering Joel.You can see Joel thinking: "candles or cake?"Joel decided he'd go for the sweet stuff.He loves chocolate!The cake was gone in a heartbeat with a smile left in it's place.Jonny said "Aw, Joel got cake on my forehead.""But I still love you, brother"At the end of the night Joel was a tired mess, so he was whisked
off to a bath and then bed.