Thursday, December 27, 2007

Okay... updating a bit....

Dr. Visickle(?) called last Thursday to let us know that all but the one test had come back and everything was in normal ranges. So while still waiting for the last results, it looks as though Benji has Ketotic Hypoglycemia. The treatment? Make sure he stays hydrated and eats complex carbs before bed. Along with the 3 meals and 2 snacks during the day. And when ever he isn't acting normal and isn't eating right... we now have a glucose meter to check him with. It's the OneTouch Ultra 2. Anyhow... that is that until we get those last test results.

On to the rather interesting and most awesome things....

After Benji had the seizures on Dec 8th he got more clumsy in his walking. And then suddenly he started jabbering ALOT more. Well... we are nearly 3 weeks after and the news is AWESOME! Benji is saying more words and using more signs, he is putting together sentences he has never put together before. (gimme that, hey, that mine, let's go) Benji is also more sturdy on his feet and not falling as much. And the major caught us off guard thing? The last two days Benji has been asking to go potty and he has peed in the potty 3 times now!

This is so awesome! Do you want to know why? It's so awesome because Benji had gran mal seizures. They are suppose to take speech away and they are suppose to cause problems in the neurological system. With Benji, God used the seizures to heal! When I cried my desperate cry that morning when we thought we were going to lose him, I begged God to heal my baby. I believe we are seeing the answer to that prayer.

Tuesday, December 25, 2007

Christmas 2007

Hope everybody had a wonderful Christmas. Benji had a very busy Christmas. At first we didn't think anything would take him away from Britt and Kimmie being home, but then he realized what those things wrapped up in paper was.
We are ending our day over sensitized and bouncy. It was good. All is well. Thanks to the Lord's blessing, the kids had a blast.

Friday, December 21, 2007

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Thursday, December 20, 2007

Got the Results from the CDC...

First off I find this funny... (humor me... the ER trip wasn't fun, but it got things moving.) On Dec 12, I got the report from Genetics that I have been waiting on since May... and yesterday we got the report from CDC and it mentions Benji's hypoglycemia. I just find it funny... had the ER trip not happened... I wonder if I would have either report.

Anyhow... as of right now... Benji's developmental diagnosis is 313.9 Disorder of Infancy, Childhood, or Adolescence and 315.32 Severe Expressive and Receptive Language Impairment by History. That tells me that there is something going on but we aren't quite sure what it is yet. But that's okay. The reason it's okay is because Vanderbilt Children's has given recommendations.

Continue TEIS.
Upon leaving TEIS Benji should be enrolled in a developmental preschool.
Pursue Occupational therapy and see how best to deal with the sensory and motor issues.
Get with speech and consult on how best to use the Picture Exchange Communication System in home and later in school. Home visual schedule too.

So... we are going to get the visual schedules going and plan more on outings and such. I got lucky today at Micah's Pre-K Christmas party. Benji got very overwhelmed but we got him back under control before we had a complete meltdown. That and he got some pringles. LOL...

Monday, December 17, 2007

Benji's Christmas Picture 2007

Endocrinology Update

Okay.... got up really early this morning.... (5.30am) got everything together and Benji ready to leave by 6.30am. Jeff was wonderful and started the truck so it wasn't completely frozen. Drove into Children's through rush hour traffic and got there at 7.45.... then I had to find a parking spot the expedition would fit in.

So... get Benji's bag and then my bag and I was pleasantly surprised that Benji was awake... he got to walk.... got in and rode the elevator up. checked in and he realized he was VERY HUNGRY. Tried to calm him but he wasn't having it. Finally got called back... did blood work that he was not happy about... and waited for the doctor.

With out the lab results, they think it is ketotic hypoglycemia. Good thing is he should out grow it by the time he is 7-9. Bad news we will have to check his blood and keep an eye on him, especially if he gets sick. We will have lab results in 2-3 weeks.

After all that Benji got to eat and we went to the Pizza Hut in the hospital and while we were there Santa and the Mrs, were there doing pictures. (I will upload it in a bit.)

Now... home for a short rest and then I get to grab Britt from school and take her to the pulminologist.

I need a rest... at least Benji seems to be doing well. He slept all the way home and the visit at Nana's.

Friday, December 14, 2007

Benji @ CiCi's

somebody says yummy....

After hard work at speech and Christmas party shopping for the school aged kiddos... Benji had an appetite. (4 breadsticks, 2 pieces of pizza and he's just getting started) Momma's just grateful boo is free.

UPDATE::: While Benji did eat a bit... (he had some brownies afterwards) He went into meltdown. There were alot of young kids there on a school field trip and he wanted to go play. That and his diaper leaked everywhere. So... Momma's very upset, very tired, and damp baby cried almost non-stop all the way home. But once we got home and got our clothes changed he calmed down for the most part. And now we are taking a nap.

Wednesday, December 12, 2007

This Morning...

Benji is still asleep, but we went ahead and checked him since it was time for meds. His blood sugar was 83, He was also sweaty. So, gave him his meds and some koolaid hopefully that will keep him up.

Me and my researching, I found two things of interest. 1) There is a link between hypoglycemia and propranolol. It is typically in behavioral treatment cases, so I don't know there. 2) The other thing of interest is Ketotic hypoglycemia. Benji's symptoms match it quite closely. The seizures when it dropped. He didn't eat dinner Friday night and got up hungry early Saturday morning asking for bread. Since then he has seemed peaked and we are having the vomiting. Both Sunday night and yesterday morning when he threw up his sugar was in the lower 80s. Which stereotypically that shouldn't mean anything except both momma and papa get the cold sweats and dizziness in the low 80s. So... it's a thought.

I think this is gonna drive me crazy before Monday. I don't like the feeling of not being able to fix it right now. I mean shoot, we just got the stable heart a month ago. We are suppose to be able to relax right? And I know that God is in control and I know that Benji will be healed. My hang up is I want to know when and I want to know how. And I want to know what is going on. Which I know.... God is in control. I have to accept it. I need to give Momma Bear a Valium. LOL...

Tuesday, December 11, 2007

It's not over yet....

Okay... so Saturday was the seizures and the ER trip.... That night Benji seemed to be okay, but tired. I would think that is to be expected with all that happened.

Sunday morning we got up and Benji was a little pale looking but other than that seemed to be fine. So we went to Worship Service at church. Figured we would just keep him with us. After the 2nd or 3rd song, he grabbed my hand and pulled me out of the pew and went towards the nursery. So we let him go based on the belief that his stuff going on was just his sugar bottomed out. After church we ran to Walmart to get prescriptions and then also snack foods for him. He seemed to be getting overloaded again... I really think it's walmart on that one.. and by the time we got out to the truck he was looking quite tired. He fell asleep on the way in to home. He slept from 1:30-4:30 and actually longer than that. It was closer to 5:30. Then we had the Christmas Program that Allie, Brittany, Josh and Micah were in. He got too fidgety during the program so Jeff took him out. He snacked alot on pb&j crackers, smarties, teddy grahams, and his juice. (I know... too much sugar... I did have other things with he just didn't want them)

On the way home from church he threw up... it STUNK!! Very sour and mostly liquid. Threw him in the bath tub when we got home and he then had a HUGE BM. I figured he was backed up (hadn't pooped since Thursday) and that was why he did both, vomited and the big poop. No diarrhea, just alot of poop. So... he setlled down, I checked his sugar level in the middle of that at it was 84. That was after he threw up the first time. I say that because vomiting can drop the blood sugar.

About an hour later he climbed into bed with me and a little while later he sat up and started throwing up again. And again... and again... Jeff grabbed him and got him in the bathroom... and he threw up again... Cleaned up our bed and him and he went to sleep happily.

Monday morning Benji got up about 7am and got his meds an hour late. Checked his sugar then (before meds) and it was 105. He asked for drink so we gave him a little bit of koolaid and he wanted bread to eat. He had two slices and then crawled back in bed. He fell back to sleep. At 9am I called the dr's office and set an appointment for 11a with him. Benji slept until we got there.

Once there he started waking up. By the time we got back in the room, Benji was literally bouncing off the walls. Talked to the doctor and explained the symptoms and everything. While he wished that Horizon had done at least an EEG, he felt there were no tests that he could run right now. He assured me that we would attempt to find out what is going on. He then cited that with Benji's runny nose that he could just have a virus and that is what caused the vomiting. He also reassured me that if anything else happens to call and he will do what he can. Also that if Benji's sugar went below 80 to call. He also told me worst case is a glucose problem. Seizures can be treated and possibly grown out of. Hypoglycemia is for life.

So... at the doctor's office Benji snacked on fruit snacks, had a chocolate chip granola bar and koolaid. Went to Nana's house where he got more drink. He also ate some cheerios. At Nana's he was mostly relaxed. He did hurt Papa's ears a couple times with his squeals. Most of the time we were there he was lying down though.

Last night he seemed to be okay. He had another granola bar and then for dinner had some french fries and a grilled cheese sandwich. He was asleep by 7:30.

Then... we were awakened this morning at 4:58a to him throwing up. Several times. Checked his temp... normal. Once he stopped throwing up and we were able to get him to calm down we checked his sugar. It was 83. Since then he has eaten applesauce and peanut butter crackers, along with some koolaid.

He has speech today at 11, so... not sure what else today will bring. Hopefully the throwing up will just be a viral thing and go away now.

Saturday, December 08, 2007

Bad day today

This morning I was woke up to Benji having seizures and turning blue. When he had his six o'clock medicine Jeff had said he felt a little clammy like maybe he got hot while sleeping and started sweating and then got cold. So he put him in the bed with me. An hour and 15 minutes later I got woke up to Benji stiff as a board and muscles spasming. We called 911, they argued about who needed to respond (we are in the middle of two districts) then 10 minutes later called back for directions. Meanwhile we got Benji to start breathing again and the blue started going away but still gray. It was shallow breaths and still seizing. The first responder got here with an oxygen tank about 20 minutes after the call. Another 5-10 minutes the first responders and then the ambulance got here. Girls it was so scary. I thought I was going to lose my baby.

As soon as they got him into the ambulance they checked his blood sugar, it was 21. Which is so not good... if mine hits 60 I am passed out. Because his sugar was so low and he was having the seizures they gave him a Valium and we went to the local hospital that I do not like. After there for about 4 hours they sent us into Vanderbilt Childrens. Vandy checked him out and gave him food and drink, set up an appointment with the pediatric endocrinologist for the 17th.

Benji at HorizonWe are now home.... and I never want to ride in a ambulance again. we got from Horizon in Dickson to Vandy in Nashville in about 20 minutes... it's normally a 45 minute drive. And you can imagine traveling that fast the bumps were horrible... Benji would start to fall asleep and we would hit a bump. Poor fella...
Benji is calm, he still is weak and he looks like he don't feel well. We have to make sure he eats every 4 hours and before bed complex carbs.. (i.e. peanut butter and jelly sandwich)

So... tomorrow we are getting the glucose meter from my SIL's sister... she just happened to get a buy one get one free this past week. (Thank you God) And it has everything with it. We are hoping to make it to church, we really felt the power of the Lord over us from our church family. While we were waiting for the ambulance I had called my mom and they rushed over here only stopping to call my SIL. Once here, my mom went two doors down to the neighbor that also goes to our church and got her on the phone to call everybody. It is so awesome to see the body of Christ lift each other up.

Please just pray that we find out what is going on. The hospital has diagnosed him with hypoglycemia... both me and my dad and one of my brothers have it. So it didn't surprise me until we found out that it is EXTREMELY rare in young ones. Then when Jeff was talking to the pdoc the pdoc told him it was either he had hypoglycemia or a seizure disorder that was also very rare. So please... just pray for my little guy. We know he's tough, but momma can't handle these scares.