EEG Results and Ear Infection

We went to see Dr. Jasna Kojic and she informed us that based on Eli's EEG on Friday he has been having Tonic Seizures. So, they are weaning him off of phenobarbital and now we will try to control his seizures by Keppra and Lamictal. He is also still on Baclofen for his muscle spasms. Right now they also have him on Clonazepam to help with seizures and to help him sleep at night. Eli also takes Milk of Magnesia to help regulate him too. These Tonic Seizures cause Eli to looked like he has just been startled. All of his muscles tighten up and one leg kicks out, one arm is raised, the other bent, and then he holds his breath and looks frozen. All the while his eyes jump up and down very rapidly. Currently he holds this pose for about 3-10 seconds. She said it could progress and become longer. He seems to have between 3-10 of them a day. But since they happen so fast I am sure we miss some since we aren't constantly looking at him.

Apparently it takes a very long time to wean off phenobarbital. She reduced his dosage by 1/2 a pill and won't lower that again for a month. The new medication could take two months before it is therapeutic. Then, if that doesn't work, we can try another medication or get a VNS device (Vagus Nerve Stimulation) placed.

She basically said that Eli's seizures are getting worse and that is a bad sign. She said Tonic seizures are harder to control and are usually only present in patients with severe epilepsy which Eli now falls into. She also said that the progression is dangerous and could shorten Eli's life expectancy.

Then I went to Dr. Miles Landis' office because Eli has had a cough for over a week and a half now and is not getting any better. Eli stopped eating over the weekend and has lost two pounds. On Sunday I thought it was getting better, but then as we left the prayer service Eli threw up twice and started to cry. Eli currently does not cry unless he is in severe paid. So, I knew things were not getting better.

Dr. Landis told me Eli has two ear infections and was very dehydrated. So, if Eli doesn't eat well today and tomorrow he will need to go to the hospital for hydration and a possible temporary feeding tube. They would have done the feeding tube in the doctor's office, but they only had infant ones and he said they were too small. But, I did get Eli to take a 6 oz. bottle, so I hope that is on the road to recovery. Dr. Landis also gave Eli a Rocephin shot and he will be on Augmentin now too.

So, all in all my poor little man is not feeling really well these days.

Kaden was very good at both places, he just smiles at the ladies as they peer down at him. All the while enjoying his pacifier or hands.

“Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.”- James 5:16

Pool Time

Kaden had his first experience in a pool yesterday. A friend is house sitting and that house has a very nice pool. So, the logical thing to do would be have a pool party right! So, they did. The Jacuzzi was great for Eli too. He has been having a rough few days. Very little eating and very lethargic. Today has been much better though. Kaden liked the warm water and spent almost 45 min in the pool.

New Website - Goodbye Babiesonline

Well, as past viewers can tell, this site is new. I figured it was time to move past "babiesonline" since Eli is no longer a baby. Also, this type of site is easier for us to use, and posting pictures is easier and linking you to other friends' sites is a lot easier too. And best of all, the website is much easier to give out. So, welcome to GhumFamily.blogspot.com - goodbye babiesonline.com. Enjoy and look for updates and news on all the "G" family members and our adventures through daily life. We have also copied over all the old posts incase you would like to catch up on all that has happened in the past.

This past week has been a bit busy and tiresome. Eli came down with a cough last week and can't seem to shake it. We have been using a humidifier at night and he has been taking mucinex, but it doesn't seem to be helping too much. In fact, it is very hard to even get him to take it down. Apparently, Eli does not like the flavor grape. Every time I try to give it to him, he gags and half of the time it makes him throw up. Which is not good since he is hardly eating either. But in between coughing fits he seems to be in a pretty good mood.

Kaden has started going to Kayla's house during the day and seems to be doing well. He is all smiles and loves to talk back to you when you talk or sing to him. He has discovered his hands and I guess thinks they taste pretty good. I think he has even started to bite himself a bit too. Once in a while you here a cry begin while he is enjoying his hands and I figure he must have chomped down.

Eli had an EEG done today. Although I am not "happy" when he has a seizure, I was "happy" he had one while we were there. Hopefully since it's a video EEG the doctor can see the seizure activity and the outward behavior all together. She had said on the phone that by being able to see a new EEG she will be better able to prescribe his medication. So, I figure she will ween him off Keppra and hopefully get him on something that works. We will see when we go back on Monday.

And, with the price of gas I am not looking forward to it. A neurologist visit is over 75 miles round trip!!! But, since I will already be out and JCPenny's sent me a Mother's Day coupon for $10.00off a $10.00 or more purchase, I think I will stop by the mall and find a cheap top to make the venture out worth it :) Thanks JCPennys.

April 9, 2008

Time is flying way too fast. I can’t believe the last post was over 2 months ago. It seems like yesterday.

Well, for those of you who don’t know, we had Kaden Fadi "G" on 2/13/08 at 4:31am and he weighed 7 lbs. 4 oz. We were scheduled to be induced on 2/12/08 and we went into the hospital and they said “nope you don’t need to be induced you are in labor”. Then, by 1:00am, it felt like I was in labor and by 3:00am, I asked when my Dr. was getting there. The nurse said she would check how far along I was and let my Dr. know where I was at. Well, at 3:55am she checked and I was 10cm dilated. Then, at 4:31am, Kaden was here and the Dr. wasn’t!!!! God had a plan to get us to the hospital in time and thank goodness because otherwise we aren’t sure we would have made it in time ourselves.

Kaden is in great health and had some tests done and everything is GREAT. We really could not have asked for a better delivery and wonderful news that Kaden is perfect; except for the fact he too looks like Fadi :) j/k. I guess I just don’t carry any dominant genes.

It is great to have two boys and Eli has been a great cuddler with Kaden. Eli has been doing pretty well these days. He has been having break through seizures for about 3 months now. After we got home with Kaden we started Eli on a new medicine, Keppra. However, it doesn’t seem to have worked so far. The Dr. is increasing the dosage and we will see where it goes from there.

We also went to the GI doctor and Eli looks good from their end. He is in the 50th percentile on weight and the 25th on height for typical children so his weight gain is doing well. Kaden was in the 50th for weight as well but only 5th in height. We have us some short boys! Don’t forget to check out the pictures below.

1 Thessalonians 5:18, “Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus” (NLT)

January 30, 2008

The New Year has begun and the weight loss in our household has yet to begin. We are not real good at keeping “New Year’s Resolutions”, so we will just have to wait for the weight loss to be in the form of having a baby :) and that hasn’t happened yet. Since Eli didn’t listen to us when we said “any day, but Christmas Day” we figure this baby will make an appearance, say mid-game on Super Bowl Sunday or Valentines Day. Whatever happens, we are anxiously awaiting his arrival.
Everything looked very good on his last ultrasound, which was over 3 weeks ago. At that time, Baby G weighed in at over 5 lbs 5oz. So, I am kind of scared of how big he will be at delivery. But we got a great report on the brain development and that is all that matters.
Eli went for a sleep study earlier this month and it showed he has central apnea, but the doctors don’t seem to be too concerned since it wasn’t long enough for his oxygen levels to drop and they said it is pretty common. The only thing they are doing for him is trying to help regulate his sleep patterns. So, we are trying (again) melatonin. I am not so sure it will work but I guess it’s worth a try. They want us to try it for a week and report on how he is doing. If it doesn’t work, they said they will try Clanazopan (sp).
Eli also had his annual shunt check and the neurosurgeon said it all looks good and we are now on an annual schedule with him barring no complications.
We are very grateful that we were able to travel to GA over the MLK holiday weekend for a friend’s wedding. As the time grew closer, we soon learned that it was going to be very, very cold there. It was 24 degrees when we left the wedding (yeah, for a Florida family that is very cold). We didn’t get to see the snow fall, but we were able to enjoy the scenery as we traveled. It was very nice. Also, to the relief of many friends and family we didn’t have a baby while on vacation. Everyone seemed very nervous since I was 36 weeks that week.
On our way up to the wedding we stopped in Macon and visited some friends. We were also able to stop by and meet Nathan the little boy whose link is at the bottom of our page. He is very similar to Eli and was diagnosed with Pseudo-TORCH when he was little as well. It was nice to be able to meet him and his family and talk about our boys.
By next post Eli will be a proud BIG BROTHER, stay tuned for updates and pictures.

Proverbs 19:21 “Many are the plans in a man's heart, but it is the LORD's purpose that prevails.”