ACTH it is!

Well we checked in the hospital at about 9 am this morning. The day started off ok until I registered Conner and spilt my chocolate milk all over the waiting room floor. Luckily the clerk was very nice about it and called housekeeping. When we got to our room, there wasn't even a bed for him yet. They wheeled that in about 15 minutes later. They hooked him up for the EEG and we waited. About 4 hours later the Dr. came in and gave me the news I was expecting. He is having infantile spasms. This is a different kind of seizure than he was having before and they are worse. For some reason they can cause regression from any of the things he may have already learned. So we have to treat them quickly and aggressively. He has to have ACTH injections everyday for about six weeks. These are bad shots all the way around.
First - I have to give them daily
Second - They are thick like gel so it will hurt
Third - They have wicked side effects like irritability, excessive weight gain, possible high blood pressure and hyperglycemia
Last - They cost about $24,000 per vial and we will need at least 2 (good thing we have insurance)
So now instead of going home tomorrow like I thought and hoped for, we will be staying until at least Thursday. I'm just praying they will release us Thursday and the medicine arrives by then.
Well enough venting about that. I am just preparing on having to give my baby a shot that hurts and has even worse side effects. Yuck!

News!

Well we have been trying to have another baby since January. I just found out on Monday that I am pregnant. I'm only about 4 1/2 weeks so we are keeping our fingers crossed that everything goes well. My first Dr. appt. is not until April 15th and I can not wait. Michael seems to be just as excited as I am. The Chinese gender predictor says it is a girl, and I have seen that it is pretty accurate, but we will see. Either will be just fine with me.

Last Sunday Conner had a different type of seizure. The Dr. and us feel that they are most likely infantile spasms. These are the bad ones that have to be treated quickly and with about $80,000 worth of medicine, ugh... So on Tuesday we will be admitting him at Cook's Epilepsy Monitoring Unit for 24 hour observation and EEG. That will be so much fun I'm sure. I guess it will allow me to finish the last Twilight book. I have to stay with him at all times since I am going alone and there will be no one to relieve me from my madness. I'm sure I will survive. Then they will determine that he is having the infantile spasms and start giving him ACTH injections. They will also be training me to give the injections, which I am NOT looking forward to. This medication has lots of side effects besides being outrageously expensive. So we will have numerous Dr. appts. to monitor his blood pressure, glucose levels, etc. It also lowers his inability to fight infections. Like we needed any help in that department. He gets sick so easily. So I guess that means we might become a hermit for about 6 weeks. I don't care what we have to do as long as it gets him well.

Growing Like a Weed

Well I know it's been a while since I posted. Sorry Katie! Conner is growing up so fast. It's exciting, but scary at the same time. I don't want him to grow so fast.

Now that we have him on some good medicine, his seizures have been really few and far between. His flu scare turned out to be pretty minor. Since he had the vaccine, he only had fever for that first night, and all was well after that. We are still doing breathing treatments daily just to avoid any wheezing and coughing.

Conner is now wearing his molding helmet full time (23 hours a day). He's doing pretty well in it. Better than I expected anyways. It's just makes holding him really hard. It's like his own personal weapon. Hopefully it will do it's job quickly and we only have to endure it for a few months.

Conner also has another swallow study scheduled at Cook's on Friday. We really hope this goes well so that he can eat some stuff orally rather than eating by g-tube all of the time. He loves to taste things, and I know he would like it. So wish us luck.

So Much For Good News

On Friday, Conner had his first seizure. He has had several since then as well. Tonight since 7:00 pm they have come on the hour. It looks like it will be a long night. We took him to the Dr. on Friday and she didn't do much. Then when we took him in Monday to see his actual pediatrician,
where we were told that he had a left ear infection, a cold, and bronchiolitis? or whatever they said. Anyways, he is now on Keppra for seizure control. We are working on getting that dose right to control them better. He also is on antibiotics for his infections and nebulizer breathing treatments every four hours for his chest congestion. Sounds like we will be going to Ft. Worth for another EEG so his neurologist can see what is going on. Most likely they emerged due to him being sick.

At least he was well for Christmas. There are many other parents on the loop that had sick children, and spent Christmas in the hospital. Hopefully he will get better soon, and we can say goodbye to the seizure activity for a little while.

Good news from the Doc

Well we went and had and EEG done yesterday to make sure Conner was not having seizures. After some screaming due to them measuring his head, writing all over it, putting cold gel and some goopy stuff on each spot marked, some little electrodes that supposedely suction to his head, all wrapped in an ace bandage, he finally calmed down for a nap. He slept through most of it. After that we saw the Dr. and he said he did not see any seizure activity. He also said he saw some spikes while Conner was sleeping which is a great sign. I guess that means he falls into a deeper sleep that some of these kids never reach. He said it was pretty normal. He also told us to keep our fingers crossed that he does not develop seizures later and that the fact that he has not already is promising.

The Dr. did however prescribe Conner a cranial molding helmet. Conner likes to sleep on a particular side of his head, and it has caused that side to be flat and misshapen. We will hopefully get that soon to correct that. I just hope it is somewhat comfortable for him and not hurt. I guess we will see.

I guess it's a good thing that we left town when we did. When I called Michael yesterday to give him the great news, he answered sounding pittiful. I asked what was wrong and he caught the stomach bug that both Randy and Emma had the day before. So we are staying in Ft. Worth an extra day to try to avoid that and get some Christmas shopping done.

Almost time for another Dr. visit...

Well we travel to Ft. Worth yet again for another Dr. visit on Thursday. This time it is the neurologist. We will be having an EEG done to see if Conner is having any seizure activity. It seems as if he has been staring off into space lately (might be absence seizures), but it usually only happens when he is sleepy. Since he sometimes sleeps with his eyes partly open it's very hard to tell. He also had a swallow study done before Thanksgiving that went awful. Hendricks is a great hospital, but they are completely ill prepared when doing a swallow study on a small child. We have decided to wait and have another one done when he gets better head control and starts to tolerate sitting for longer periods. It will also be done at Cook Children's.

He has been making great advances in his physical therapy lately. He can sit with assistance and hold his head steady for several seconds now. He also will lift it longer and higher during tummy time and continues to roll over. So we'll keep working on it.

His respite nursing will begin soon. I'm kind of nervous about that. I have not left Conner with anyone besides Michael, his Nan, or his Grandma so I think it will take me some time to trust this person watching my son. We will have 19 and 1/2 hours per weeks. That will give me uninterrupted time for my transcription and school work which will be nice. I can also go to Walmart without spraying everything we touch with lysol to keep Conner from getting sick.

Roo had puppies on the 6th of December. They are getting bigger and whine quite a bit. I'm ready for them to be gone already. We have promised two of them to certain people, only three to go. They should be ready around the middle of January.

Story of Conner Garett Barbee

The test came back positive after three months of trying. Michael was hunting so I decided to text him with the news. I knew he would not answer the phone if there were any deer near his blind. He was so excited. Family happened to be in since it was close to Thanksgiving. We decided to go ahead and tell everyone. So we sat in the dining room while everyone was playing apples to apples and dropped the news. Everyone was excited for us. The first couple of months of Dr. visits went well. Everything seemed to be progressing as normal. At 20 weeks we saw a specialist to determine the sex and finally had our answer...it's a boy. We went back at 24 weeks to ensure everything was still progressing as it should be. We got the scare of a lifetime. The Dr. said the ventricles in Conner's brain were enlarged, and that his stomach was measuring smaller than normal. All of a sudden joy turned to panic when he advised we do an amniocentesis. I thought, I'm only 26, why do I need one of those? Anyways the test was done immediately and we began the long greuling wait for the results. After about 2 weeks all results were in and nothing came back as odd. The Dr. decided to send me for a fetal MRI. That was interesting. Everyone who has ever been pregnant knows that lying on your back for too long makes your legs and arms go numb. To top it all off Conner did not enjoy the noise and moved constantly so it took about an hour and a half to complete. When the results came in, the Dr. said that Conner was missing a very large part of his corpus callosum (the area of matter that connects the 2 halves of the brain). We continued to go and see this specialist about every 2-4 weeks to keep an eye on things.

Three weeks before my due date, during church, I started to have some really sharp pains. We decided to go home and time the contractions. I was not sure if they were acutal labor pains or not. Margarett said they were and it was time to go to the hospital. Of course I insisted on eating first. I had heard too many horror stories of women have 24 hours of labor and no food. After a Subway sandwich I was checked into the hospital at 2:30pm. I was checked by the Dr., my water was broken, and at 7:30pm Conner arrived. He was 18 inches long and weighed only 4lbs. 8oz. We knew something was wrong with him, but no Dr.s in Abilene were able to diagnose him properly. Two days later he was flown on a helicopter to Cook Children's Medical Center in Ft. Worth. That was very hard and scary for me.

We quickly packed our things at home and headed that way. Conner was taken care of very well there. They quickly had a neurologist and a genetecist see and test him. His genetic testing came back positive for Miller-Dieker Syndrome. This is a micro-deletion syndrome where the brain is smoother than it should be (lissencephaly), seizures are almost always evident, and developmental delay can be greatly impaired. Of course this was very hard for us to accept and understand. We were also given the news that we would have to be tested to ensure that subsequent children would not have a high risk for the same syndrome. Luckily we found out that it was a fluke and just happened by a very rare chance. Conner was also having trouble eating. He would choke and silently aspirate when he drank from a bottle. We finally opted to have a g-tube put in. That has been well worth it. He is now almost 12lbs. We stayed at Cook's for almost a month, and were very happy when we finally got to go home.

Since then, Conner has been doing very well. As I mentioned before, he has gone from 4lbs. 8oz. to almost 12lbs. We have not seen any seizure activity as of yet. Keep your fingers crossed and pray that we are one of the few that will avoid that part of the syndrome. With the help of our physical therapist, Conner has been doing very well on head control and rolling over. He has also been grasping things and sucking on them. We also have a swallow study scheduled for tomorrow to see how well he will do with thicker foods like rice cereal. I gave him some last night, and he did not choke at all. He quite enjoyed being able to taste something.

Having a handicapped child definately threw us for a loop regarding our plans, but he has been the biggest blessing that anyone could possibly receive. We love him very much.