December 28, 2007

Sorry for the long time in-between entries. Nothing too worthy to note going on lately; just the business of a busy life. We had a great Halloween. Eli got to dress up three times. GG got him the Shrek costume but it was too small and we couldn’t find a bigger one. So, Eli got a Hobo Clown costume. But his PPEC was dressing kids up a day early and they dressed him as Dracula, which fit, since he broke his two top K-9 teeth that month. Mind you those were his only top teeth!!

I was working at Judgment House and Fadi was studying again for his PE Test (we got the results this week and HE PASSED!!!!). Then November came and went with a great Thanksgiving. Then Christmas Parties, Christmas shopping and Christmas traveling.

Eli has now gone THREE months without an ear infection and we are extremely grateful for that. In the middle of December he started tensing up and wasn’t eating very well. We think this was due to some seizure activity. We had his blood levels done and he is maxed out on his meds, so if he starts it again we might have to add an additional medication. He also had a sinus infection so maybe that had something to do with it too. But we got that all cleared up just a few days before Christmas/His Birthday. We traveled down to Boynton and visited with family and had a great time. We stopped by Bascom Palmer on Friday for an eye exam and then spent time with family. Fadder Johnson even got out of the Hospital for Christmas Eve and was able to join us and Eli hung out in his lap. We had a small cake and sang “Happy Birthday” then headed home. Eli’s big item this year was his high chair, which he loves! Even though he still can’t eat with a spoon he enjoys sitting up and the high chair is great for that.

We have had some routine visits with doctors. Eli still has to have thickened food just not as thick as it used to be. He really hasn’t improved too much in the oral motor area but he is eating his bottles (8oz) faster and more consistently. They don’t think he needs a feeding tube as long as he keeps eating well. His weight has been good too. He weighs 28 lbs and holding and was 2’9” tall when we last checked. Bascom Palmer again said the eyes don’t seem to be candidates for reattachment but they don’t look any worse either. He said he would be surprised if Eli could distinguish light and dark do to the severe damage and complete detachment of the retinas.

In January, we go to the audiologist for new ear molds and we will start back with hearing aids. We took a break with all the ear infections and what have you. Also, Eli is having a sleep study done to see why he won’t/can’t sleep through the night. And, he will have his annual shunt check.

I will go for my last ultrasound for the baby who is growing large! I don’t see how there is much more room for him to grow but I guess we have 7-8 more weeks left. Hopefully at this next appointment they will be able to see the baby’s brain and verify that there are neither calcifications nor hydrocephaly. We have started getting ready for his arrival home, but the second child preparation sure isn’t happening like it did for the first. Hopefully we will have caught up before he comes home.

Thanks for checking in on Eli and us and we wish everyone a Happy New Year!

Isaiah 30:21 “whether you turn to the right or the left, your ears will hear a voice behind you saying “this is the way, walk in it.””

Psalm 40:1 “I waited patently for the Lord; he turned to me and heard my cry”

October 11, 2007

Things are moving right along in our house these days. Who can believe it is almost the Holiday Season. I mean Halloween, Thanksgiving and Christmas are right around the corner. Eli is ready for Halloween, he will be dressed as Shrek this year (see pictures). I am ready for Thanksgiving; I love sweet potato casserole!! The little boy inside is craving it!!!!

Oops, I let the cat out of the bag. We are having another little boy. During his ultrasound he proceeded to tuck his little head very, very low and did not allow a good shot of his profile. However, he did display his manliness. There is no doubt this one will be all boy. Everything on the ultrasound and our previous blood work has come back with wonderful results. Everything is looking as good as it can. They will do another ultrasound in January to make sure the baby has not become Hydro-cephalic or developed cerebral atrophy and calcifications. They don’t think these things will, but they just want to make sure. Then upon his birth they will do an ultrasound on his brain thru the fontanel (less invasive than a CT) as well.

Eli has been happy these past few weeks. However is seems like every four weeks he gets a double ear infection and just cries for about a week until they are all cleared up. We are praying that we can go longer than four weeks this go round. Otherwise we may have to add another doctor to our list of specialists.

Eli also got another round of Botox shots in his thighs and also got some in his biceps. His arms relaxed a bit right away and his legs are doing great.

Also, since according to the calendar it is now officially fall, his aquatic therapist has closed down sessions during the frigid weather we have here in Florida. So, Eli has gone on a hiatus for his aquatic therapy until next summer.

Psalm 130:5 (NIV) I wait for the LORD, my soul waits, and in his word I put my hope

August 27, 2007

Boy this summer sure has been hot! Why is it that so many people love to visit Florida this time of year? We have actually had a few visitors this past month. For a good two and a half weeks I feel like we never were home, and if we were our house was taken over. Now, this is not a bad thing. We thoroughly enjoyed all of our company. However, Eli was not so glad to have them there.

At the start of our first visitors, Fadi’s younger brothers came and stayed with us. Eli started crying a lot, so we took him to the doctor and again he had two ear infections……this time with one ruptured ear drum. NOT a pleasant experience. Then once that cleared up, we headed to the beach with my mom and Rick. Eli had a great time and did wonderful in his raft. He floated above the waves and took naps in the shade. We enjoyed an all you can eat Crab Leg Special and had a great time :) Patrick and our dog Ella even came and joined us for a night.

Then once that was over, we had a missionary from India come into town for our church’s Global Impact Conference Week. Sandi was with us for a week and she keep us entertained. Eli didn’t have the greatest week while she was here, but all in all it was a good time. We think his muscle spasms were bothering him, so just this week the doctor increased his Baclofen (muscle relaxant medicine) and it seems to have made him happier.

Now, that the Women’s Retreat with our church is done, we are now headed down to Boynton Beach next week for Labor Day!!!! This summer has been an adventure and I will be very happy when things calm down and I can catch up on my rest. Eli on the other hand sleeps whenever and wherever he wants, for however long he wants. When we are out, others are amazed how he can sleep through anything.
On the new baby front, the front is now showing. We also had an ultrasound done on 8/14 called a NT ultrasound (nuchal translucency). This scan is carried out at 11-13 weeks of pregnancy and assesses the amount of fluid behind the neck of the fetus. Babies at risk of chromosomal abnormalities tend to have a higher amount of fluid around the neck. The doctors told us a high amount is 3mm and our scan only showed 2.59mm so that indicated thus far that everything is going well. The also drew blood and are working up some other risk factors. So far things are looking good, except my waist line. The tech was not so sure on the sex of the baby, she kept going back and forth. So, we will have to wait until 10/9 to find out the sex of this little baby.

Hebrews 10:23 “Let us hold unswervingly to the hope we profess, for he who promised is faithful.”

June 25, 2007

Eli is doing very well these days as you can tell via his private photo shoot. Yes, it was done by none other than good ‘ol mom!! It was very fun! When Eli wakes up from a nap he is usually very happy. So, last Saturday when he got up from his nap, I quickly dressed him and started snapping away. Of course Ella cannot let us out of her sight, so she proceeded to join Eli in his photo shoot.

Eli got a bath chair. I cannot tell you how much this helps. Bending over the tub to reach him, or holding him in the shower, it was getting to be too much. This bath chair has a little stand, which keeps him about waist high. Luckily we found a shower head that divides the water and lets us have two shower heads. So, Eli gets one to keep him warm and I get one to keep me warm.

Eli got a vertical stander too. I know is looks like a medieval torture chamber, but he really likes it. It has a little tray that helps keep his hands in front of him. He will actually stand in it for almost an hour. And, very happy too; making all kinds of noises and smiles.

Our 4 year wedding anniversary is on Friday, June 29. Life has sure brought us a long way in four years. And it looks like we will have another adventure before our 5th too. We are having another baby!!! Our next bundle of joy is expected late February 2008. We will keep you informed on the new baby info as it comes.

As we venture on this new endeavor please pray along with us that this baby is formed completely inside and out. I have chosen Psalms 139:13-14 as our verse for this pregnancy. We know that God’s plan for us is to be parents of more than one child and we pray for this child daily that it meets all of its milestones and is healthy, happy and complication free. We love Eli with all our hearts and just wish to spare our next child the pain and hard times Eli has gone through, and still continues to go through. Eli has been a blessing, albeit in disguise; and we know this child, no matter what, will be a blessing too.

Psalms 139:13-14 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

June 04, 2007 Change-That is the word!

Cheryl changed Jobs (from Title Insurance to FBC Oviedo), Eli changed PPECs (Pediatric Prescribes Extended Care) and this month Eli will change UCPs (United Cerebral Palsy Center) in the middle of June. Both of Eli’s changes are to make him closer to us and work. After it is all said and done, both of Eli’s daycares will be less than 3 miles away from our house!!! Whoooo Hhoooo!! I am looking forward to saving money on gas already!!

Eli’s Botox has worked great. He has no side effects from it and he now can spread his legs. This has made diapering a lot easier and he looks more relaxed since his legs are not as stiff as a board.

Swimming is going great; he really likes it and does really well. I tried to duplicate what his therapist (Katie) does when I took him to the pool on Memorial Day….well, lets just say I need some more training. But none the less, Eli had a good time.

Eli has been making noises like crazy lately. It is very funny to watch. It almost seems like is singing a song.

Eli also visited Bascom Palmer again last month. They informed us that both retinas are completely detached. The Doctor would not say as to Eli’s ability to distingue light and dark. He said it was possible, but we would not be able to tell in Eli’s case.

Things are going well in the "G" house. Hope they are in your home too.

Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”