2hearts - prayer support for Keegan

I know the updates have been few and far between but my internet access is limited. I miss talking to all of you. :) I hope all is well with everyone.

Keegan has been doing pretty well. He started 1st grade in September and is either on or above grade level for all subjects. His health has been good overall. He is still having minor issues with absence seizures and behavioral problems; not really a problem -more like extreme hyperactivity. He has seen a behavioral pediatrician who will give his thoughts on the issue on Christmas Eve this year.

Keegan has a healthy baby sister Abigail Rose "Abby" she was born on September 19th weighing 6 pounds and 10 ounces. Keegan is such a proud big brother and has really surprised me at how well he has handled the change. Iwill update again asap. Next time Iwill try to include a recent picture. Still praying for you all.

We are doing okay. Keegan is doing awesome. In school he is above grade level for all subjects. He was evaluated by occupational therapy and they want to work with him for a few months. We don't get an evaluation from speech until January. He is still taking anti seizure medication and it has completely stopped the seizures. He also still takes medicine for his migraines which are rare now.
He has grown sooo much. I will take tons of pics at Christmas so I can share his amazing growth with you all. Thank you for the continued prayers for Keegan.

We are moving on December 15th so my contact will be less often for a little while. I hope you all have a wonderful Christmans and a happy new year and I will talk to you soon :D

Deanna

We saw neurology today and they said Keegan is having absence seizures. They started him on anti-seizure medication. They said eventually Keegan will have grand mal seizures. The bleed in his brain is causing speech problems, vision problems, and problems with fine motor skills. He will be starting both speech and occupational therapy. The doctor said he wont get worse, the only thing that will get worse is the seizures, but writing and speaking clearly he will struggle with his entire life because that part of his brain does not function properly.

I am completely devastated. My poor baby. The doctor said that almost all kids with bleeds in the area of the brain where Keegan's is never walk or talk and some never see, so we have been fortunate.
anyways.......keep praying and I will keep you all updated.

I talked to neurology today and they said the results are very abnormal. They said the test did not record any seizures for that 48 hour period but that doesn't mean he isn't having them. They still think the eye rolling and staring are involuntary "glitches" because of abnormal electrical activity in his brain due to the bleed, which they are still saying has been there for the last 5 years.

I spoke with the physician's assistant today and she didn't really give much info other than the above but said she was going to discuss it with the doctor and come up with some plan of action and they want to see him in the office next Thursday. As soon as I have more info I will let you all know. Keep praying. Keegan's been through enough.

My doctor just had to put me on something for my nerves. I'm sure none of you know but I have obsessive compulsive disorder. Ihave had it for years and it has only recently, since all this stuff came up with Keegan, began to be a huge problem. So pray for my sanity too.

Keegan went in for his MRI and they found a bleed in his brain. They think it has been there the entire time since his surgeries right after birth. They are not sure what kind of affect it will have on him. They told me if it is an old bleed then they probably won't have to do anything. They think this is why he is having the staring spells and the eye rolling he does. The part of his brain that was affected controls those things. They still believe them to be seizures but we have not got results back from his 3 day video eeg. They said it could be up to 3 weeks for results.

H e also had to get glasses but he is doing great with them. As soon as he put them on he was amazed at all the things he could see. They also started him on a new medication for his migraines and that is working great.

On a happier note he started kindergarten on the 20th and is doing awesome. His teacher met with me this morning and told me that Keegan is advanced beyond the kindergarten level. She also said as soon as they get into their routine she will work one on one with him so he doesn't get bored. :D I'm so proud.
H e also just got promoted at karate to a gold belt. He will be in his first tournament on Sept 16th. As soon as I get any more info I will update you all.

First we saw the neurologist and she noticed while we were in the room that Keegan stared a lot, which he does, but I just assumed he was just staring and she said that could be a sign of seizures. Then she noticed he paused in mid sentence and he does that all the time...I thought he was gathering his thoughts she says it can be a sign of seizures. Then we went and had an EEG done and he cried himself to sleep begging me to go get his daddy (who was at work) and saying please don't let them do this to me. After my heart was done breaking into a million pieces Keegan had cried himself to sleep. After about 10 minutes she said she was going to flash different light patterns in front of his face while he was asleep because people who are prone to seizures will react to them even while sleeping. As soon as she started doing it the right side of Keegan's body started twitching. His right hand, right leg, and right foot. I asked her what that meant and she said I would have to wait for the doctors to read the results and someone would call me next week. Keegan has also now been referred to a pediatric ophthalmologist to have his eyes checked, for a sedated MRI (which means being admitted to the hospital) and also to another area hospital to have a sleep study done. Apparently kids who don't sleep well are more prone to headaches and at his age he should obviously be sleeping through the night which he has NEVER done so she wants to find out why.

Needless to say my nerves are shot and I feel sick on my stomach and now I have to worry for a while longer until all the tests are done. Pray that the test results show nothing and that Keegan is just another unfortunate member of my family to suffer from migraines. She did prescribe him a daily med to help him not get headaches at all. The side effects are being tired and hungry and we need both. :)
Keegan weighed 41 pounds today and he has gotten quite a bit taller, big growth spurt actually. (sorry can't remember for the life of me what the height was exactly)

Keegan has been having horrible migraine headaches with light and sound sensitivity and vomiting. He has them a couple times a week now and the cardiologist seemed a little more concerned than I would like him to be. He is sending him to a neurologist next Friday to have him tested to see if there is a cause for the migraines. Keep keegan in your thoughts, and pray that it is just headaches and there is no underlying cause. He has been through enough. I will update everyone when Iknow more.

April 20
Keegan's surgery went well. The doctor said everything looks awesome his arteries are all clear and his heart was functioning completely normal. The biopsy results as well as the water contamination results will be in on Monday. I will update everyone as soon as I get them. Thank you all for your prayers.

April 16
Keegan's pre-op went well last Wednesday. His echo, ekg, x-ray, and blood work all looked good. He has been having spells of turning blue around his mouth and the cardiologist thinks it is well water contamination. The only place he goes that has well water is his school. During his surgery on Friday they are going to take blood to test Keegan's nitrate levels. The cardiologist believes that is what's causing the blue. I will be sure to update you asap after the surgery.

Deanna

March 6
Just thought I would write a quick note to let you know Keegan's cardiac cath and biopsy have been scheduled for April 20th, his pre-op appt will be on March 28th.

Keegan just got home from All Children's. He got tubes put in his ears and his adenoids removed. He is still in quite a bit of pain but they have him on codeine which knocks him out every time so he should recover just fine. Everyone keep him in your prayers that this works for him and Keeg can finally get a break from ear and sinus infections. I will try to update in a few days.

Keegan had his ent appt on Thursday and they will be putting tubes in his ears and removing his adnoids which are apparently to large and causing fluid build up in his ears. i will be calling Monday to set up the surgery. keep keegan in your prayers poor little guy can't seem to get a break lately. i will let you know when i get a surgery date and we are still waiting for school pictures to come in but when they do i will be sure to send one. :D

Deanna

Just wanted to let you know that Keegan got his very first report card and got all A's. I am so proud of him. He LOVES school; he even begs to go on the weekend. lol
He thinks they are there without him. I should be getting his school picture back soon and I will send it out so everyone can see how big he has gotten.

Please keep him in your prayers, he is having trouble with ear infections and they are going to be putting tubes in his ears I will let you know when I get a date for that.

Deanna

As always I will be prarying for all the kids and families on 2hearts.
Just wanted to give you a little update on Keegan's first week of school. He absolutely loves it. His teacher says he already knows everything they are doing right now and she can tell someone has been working with him. He also surprised everyone especially his teacher with his social skills. She said he plays with everyone and is the most polite 4 year old she has ever met. He begs to go to school every second until we leave in the mornings. He is doing wonderful. I will be sure to keep everyone updated.

Deanna

I know it has been some time since an update for Keegan, but we have been very busy. We recently moved a few towns over so that we would be in the right county for Keegan to attend preschool. He will be going to private school. It is a great school. All of their students are gifted. They take foreign language in preschool, they all read, it is amazing what they do here. So please pray Keegan will handle the adjustment of being away from us well. He starts on Tuesday and will go 5 days a week from 8-230. He is so excited but of course with all he has been through I am worried and nervous.
Keegan has been doing great. He has had absolutely no problems at all. His heart is great, and he has been healthy. He is truly blessed. I will begin to update more often now that we are getting settled again.

Deanna

Keegan had his very first teeth cleaning yesterday. He did soooo good, I was so proud. He sat right there for them and let them clean his teeth. He had a good report. No cavaties, no problems at all. I am really happy with that. I thought he would maybe have some gum issues due to the cyclosporine but he doesn't. He is really blessed.

Heart wise everything is still awesome. He has not had any problems at all. His next cardiology checkup will be in November. I will be sure to update you all.

For Halloween this year Keegan picked a skeleton costume. It is so cute. I promise I WILL take pics so I can get all of you some updated pictures of him. He is really growing like a weed. He has gotten so tall just over the last few months.

I also got Keegan a tutor. They will be coming to our home once a week to get him ready for preschool come September. I just can't believe it is already getting close to school time.

Well, I think that's about all for this update.

Keegan had his regular 3 month checkup 2day.
Everything looked really good again, they said the echo was perfect as well as the EKG. He will go back again in November.

He's still 37 and a half inches tall and weighs 33 pounds still...which surprised me since he is going through another non eating spell. I will be sure to keep everyone updated.

Keegan went in today for his pre-op appt. Everything looked great. They took him off Zyrtec and want him to use it only if he needs it now. Now he is just on the two immunosuppressives and magnesium.

The quarter was not a huge concern right now (sorry for those that havent heard my very first time leaving Keegan ....I went back to work finally....he swallowed a quarter!) They said Monday while he was out they would peek and see if it was still in his stomach.

He is still in a normal heart rhythm too which is awesome. They put a 24 hour holter on today and we will take that in with us when we go down Monday for his cath and biopsy. He weighs 33 pounds and is 3ft 1 1/2 inch tall.

Everybody pleasekeep your fingers crossed for Keegan. He swallowed a quarter yesterday.........we took him to the er to have it xrayed and they said it wasnt worth the risk to take him into the er. Since he was not having any trouble breathing they thought it was in his stomach so now we just wait.

Keep him in your pryaers, the last thing the poor thing needs is more surgery.

May 11, 2005

I received Keegans pre-op and surgery dates today. He will have pre-op on June 1st and will have his cath and biopsy the following Monday, June 6th.

Please keep him in your prayers that everything goes smoothly and we only get get news.

February 6, 2005
Just wanted to let everyone know Keegan had his 3 month checkup last Wednesday and everything looked great. He is also now off of Verapamil which he has taken for two years for his irregular heart rhythm, so pray he does well without it. He will have a 24 hour holter put on in two weeks to make sure his rhythm is okay on it's own.

In May he will have his pre-op appt for his annual study which will be a catherization and biopsy this year, I will let you know when I have a date.

Deanna

Keegan went on Wednesday for his 3 month checkup and heart wise everything is great. He also gained back some weight finally the carnation instant breakfast is working he is back up to 30 pounds again.

They left all meds as is for now because Keegan is sick. Started running a low grade temp Monday night and Dr Korang checked him from head to toe and Keegan has an ear infection in BOTH EARS! I couldnt believe it he has not acted sick or pulled at his ears or anything....I felt awful. I am his mother I should have known somehow! Well anyway now he is on strong antibiotics for 10 days and we will f/u with his pediatrician on the 15th to make sure all is well or to see if he needs another round with a different antibiotic.

Now of course because of the antibiotic he has diarrhea so we are back in training pants and having lots of accidents. His poor behind is red as fire and I have been coating on the Desitin every change. He was so funny though once he heard the doc say he was sick he started fake crying that day and saying I am sick mama I feel yucky and I have medicine. LOL -he is too cute.

The fever finally broke yesterday so hopefully the ear infections will clear up as well.
Sorry this update was soooo long. Just needed to do some venting.
Please send many prayers and get well vibes Keegans way.

August, 2004
Keegan had his 3 month checkup with his Cardiologist today. Everything is going really well. Keegan was so brave. He cooperated with the Echo and Office Visit, and when it came time for his labs he just asked her if he could get his boo boo on his hand and she of course got it from his hand for him. He was so good. On the way home we had to stop and get a happy meal and then we ran by the store to let him pick out a toy. He picked a blow up spider-man chair!

Keegan lost a few pounds. He is back down to 25 pounds. He cut all 4 molars at the same time so he has not been eating well at all the past few weeks, but they just want me to give him carnation instant breakfast to make up the calories he is lacking.
He also had a great Echo. He will go back in November and at that time they plan off weaning him off of his Verapamil which he has been on for two years to control his irregular HR.

Yesterday he had his first Dentist appt. He did really well there too. He does not have any cavities and we will be calling tomorrow to schedule his first cleaning. Because he has a weakened immune system he will get a hefty dose of Amoxycillin 2 hours prior to the appt., but other than that it will be a routine cleaning. He liked them, they gave him toys and stickers and of course a new toothbrush and mickey mouse toothpaste, or as he would say "gickey mouse."

Editor: For background on Keegan see the 2hearts guest book or read his testimonial on this link in a new window.