Rambling. Dreams.: 2012

It's official, I am the worlds WORST blogger. I knew I wouldnt be great at this when I set up the account BUT I feel like I need to give a Preston update for those who would like to know.

So, 3 weeks ago Preston had his most recent EEG...was supposed to be only 24hrs of course ended up being 48. ANYWAY; we had an MRI when we were there as well. Preston's regular neurologist was actually out of the country (must be nice). We ended up seeing another neurologist & I honestly feel like the moment we saw her God said "here is the break you've been praying for" we finally got ANSWERS. Preston's regular neurologist is great but I think it took someone else evaluating him & just seeing it from their perspective to catch the problem. We have known Preston has been having complex/partial seizures but the spasms we never we told what they were...Dr. Kim diagnosed him with Epileptic Spasms...which is the same as Infantile Spasms which no joke is what I diagnosed him with at 4 months old but I'm just a psychotic mom that researched for HOURS on seizure/spasm disorders. I am pretty sure I know everything about a brain & about seizure disorders bc I read everything. So these epileptic spasms are what have been causing Preston's delays....children with these often regress which Preston hasnt really regressed he's just kind of at a stand still. The MRI results showed no change..which is GREAT NEWS! This means all of the seizures he's having arent causing any severe brain damage. He does have a few places on the MRI that are white areas but they're small and have been there since birth...(When I was pregnant with Preston he had some sort of bleed on his brain & enlarged ventricles. He was born with a small cyst that disappeared on its own). So Dr. Kims treatment plan was to start Preston out on a very high dose of steroids and then to start the Ketogenic diet. With the steroids we now have to check Preston's urine every morning to check his Glucose levels. Home health also comes to the house twice a week to check his blood pressure to make sure the steroids arent causing him to have high bp. With steroids also comes fussiness...but thats no biggie we can handle that! On to the Ketogenic diet...

Last week we were back at Childrens to start Preston on the Ketogenic Diet (The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizure)
The diet requires hospitalization due to the drastic changes to his body & also to educate us on it. We were given a scale & we now have to measure out all of P's foods in grams. He MUST get the EXACT amount and he has to eat everything! While we were in the hospital he had to have his little finger pricked every 4 hours for 3 days for them to check his glucose levels and we were all checking his urine with every diaper waiting on him to go into Ketosis. We are in the process of wiening him off of his steroids bc its so difficult for them to go into Ketosis with the steroids. We were all really worried about P being on the diet bc he has had problems eating, drinking & gaining weight. Up until last week we were having to give him fluids through a syringe because he refused to drink. While we were in the hospital he started drinking from a bottle again; Praise the lord. We had actually been referred to a GI doctor to talk to them about a feeding tube..BUT Preston is doing great!! He is eating everything on the diet and all are textured foods...before if anything was textured he would gag on it and throw it up. Hes actually trying to chew on the food and he doesnt just push it out of his mouth he's eating SO GREAT. I feel like he is a whole new child. So far we have been spasm free since Friday...I am so excited I wanted to cry, laugh, & scream all at the same time. He is doing WONDERFUL. And his urine isnt even showing he's into Ketosis yet so I cant imagine how well he will be doing once his body is into LARGE KETOSIS. He's more alert, even his therapist are noticing! I have prayed & prayed for God to help my baby and I feel like we can finally see the light at the end of the tunnel. this diet is HARD work...EVERY meal has to be measure precisely...he cant just have anything to eat now. he can only drink water & no one can just stick their finger in something and give it to him bc it can cause him to have a seizure. They arent sure WHY or HOW the diet works they just know it does. IDC why or how either :) Preston is such a inspiration...he's such a strong little boy. He is one of the busiest kids- he has PT&OT twice a week at a center and then PT&OT come to the house every other week..now he's got home health coming out along with all our doctors appointments. I am so thankful to have my mother in law by my side through all of this. Jon works such a difficult schedule it makes it impossible for him to be there which he hates BUT he knows I am strong enough to handle these things and he's there for us as much as he can be!! My job is great and really lenient with my schedule & they tell me always family comes first, not many companies think that way. I am blessed in so many ways. Please continue for P to keep up all the great work and hopefully we can get him caught up and on the right path. I am strong & there for my baby boy & I appreciate everyone who has been so supportive through these past almost 2 years. (cant believe he will be 2 in 4 months!!!) Some people, family included havent been there for us and it's really gotten to me...Its one thing for people to not care for me personally but to not care for a innocent child makes you heartless. Thank you all so much for all the positive thoughts & words of encouragement..I can not thank you enough!! #blessed. Also, we go Thursday for a in office EEG & to meet back with his regular neurologist...Please pray for more positive feedback!!

I’ve decided I am going to become an addict to my blog like I am with Facebook.

There has been SO much going on lately. Jon has started working shift which means we rarely see each other. There have literally been days I don’t see him at all. We have increased Preston’s therapy to *hopefully* speed up the process of his progress. Jordan & Haley had their baby girl (our niece), Lilly a week ago & mom was just in town & I am still working on my weight loss goals (25lbs down so far). CHAOS! But I like being busy its keeps my mind off of things.

Mom came this past week & for once it wasn’t too extremely hectic. Normally she tries to cram in a million things to do & this time we didn’t really do much of anything..which was nice. Its good when people who don’t see Preston much see him & can notice his progress. We’re all with him everyday so we don’t see it like others do. Its comforting to know he has made enough progress to where it is noticeable to others. Sometimes I feel like its all going SO SLOW. Its hard to be positive all the time.

Since mom was here I got to spend a LOT of time with Sarah & Evan (niece & nephew). They are such GOOD kids. Its almost hard to believe my brother is their dad J lol I wish I could get them more..i offer to keep them all the time. I want them to know they can always come to me for anything.

Our BEAUTIFUL niece was born last week & when I say she is one of the most beautiful newborns I have ever seen it is the truth. She has the cutest chubbiest cheeks & is precious. AND best part she is 100% HEALTHY. Thank you God! Which we didn’t expect any problems since Haley's pregnancy was healthy overall! I did have some what of a meltdown when I was home after she was born & I had just laid Preston down for the night…I blame it partially on PMS but I just kept looking at her newborn pictures & I got so upset bc I didn’t get to have that..I didn’t get to see Preston & hold him when he was born or have family watching as the nurse brought him to the nursery to see him for the first time. I am SO glad Jordan & Haley did and I am SOOOO happy she is perfectly healthy but I was just having a bad day & I couldn’t help but ask why me?! I believe God has a plan for everyone & I know I am strong enough for the hand we’ve been dealt but sometimes I have my moments when I cant hold it together anymore.

In other news…

I bought a camera in April of last year..not just any camera I went out on a limb and bought myself a super expensive nice camera so that I could take pictures of Preston 24/7. It has worked MAYBE 2 months out of the year that I’ve owned it. Best buy has made their second “repair” last week…I got my camera back on Saturday after they had LOST it. Yes, best buy LOST my camera somewhere in the back. Saturday afternoon I am snapping pics left & right and what do you know the screen gets all these vertical crazy colored lines & quits working……SERIOUSLY?!? I *WILL* be getting a NEW camera ASAP for free. Or I will be arrested at Best Buy.

Things are crazy but I am going to try to make posting a habit. J

Heres a few pics I was able to get before the camera died on me again.