What a day, What a Testimony

Today we went for Brady's "swallow study". Because he has been on bottle strike for 5 weeks now, we needed to check and see if when he does get liquids, its going down the right pipe. He had the "hand, foot, and mouth" virus the first week of July and he has not taken a bottle since then. Its been pretty aggravating because a baby has to have fluids, even I know that, but my baby refuses any type of liquid!! I have been syringing him fluids for the past month so he doesn't dehydrate and let me tell you, its getting old! We put him behind this x-ray machine and had him take different consistencies of liquids from the spoon and everything seemed to go down right but when I did it with the syringe, it went straight down to his lungs!! So needless to say, we will NOT be syringe feeding him anymore! After that test I went over to the Medical Mall (not in the best part of town) to turn in a application to get him in with the feeding specialist to see if maybe she had any suggestions. Well, we walked in and the feeding specialist was in the lobby with another specialist and the lady who authorizes applications so she asked if we could just see her today! "Are you kidding me?? Can we? I have been force feeding my son for 5 weeks! Yes we can see you!!" So we did. (and it just so happened that the application got approved right away! (which normal takes a couple of weeks) Isn't God Good? So we had a long visit with her. She watched him eat and watched what he did when I tried to give him a bottle and she said he just associates liquids with pain. He had soars in his mouth during the Hand foot and mouth virus and it hurt to eat, and since then we have been traumatizing him with a syringe!!! So, naturally, he doesn't want anything to do with a liquid. But we are gonna thicken it up and see if that doesn't work any better. It did while we were there, so I am very encouraged! This has been a very frustrating few weeks! Probably the most frustrated I have been as a parent so far and to know that there is now someone with suggestions ... that is such a relief! Oh yeah, after we left the "swallow study" we got a call from the Neurologist saying that Brady has a perfectly normal awake EEG yesterday. And he no longer has the diagnosis of "infantile spasms"!! This catastrophic, devastating, seizure disorder did not win over my Brady. We have God on our side and there is nothing that can't do, no sickness that he can't heal. I give God all the glory for this one and one day Brady will to! What a testimony he already has. Thank you all for your prayers! They were heard. He was healed! Jenny

Scared of the Cookie Monster!

Well, I have finally found something that Brady is not too fond of! The moving, laughing, vibrating, cookie monster! It freaks him out!! You have to watch this.. I took it away as soon as I made this video.. but it was too cute not to share.

By the way, I believe this was a gift from Nana and Poppy! HAHA.. dont worry, I wont tell him who its from...

First day of Occupational Therapy

Today was our first day of O.T. ( it was more like an evaluation to see what we gotta work on) either way, Brady did great! He just loved Ashley! He is a big flirt!! She is going to start coming out weekly to get Brady doing things that he shold be doing at his age and hes not.. We have noticied such a big improvement since we have taken him off all his meds already. In the past month alone we have stopped Topamax, Phenobarb, Hydrocortizone, Prevacid, and ACTH! So even without the therapy he has already come so far. So this should help even more.

We also saw Dr. Parker today! We love seeing Dr. Parker. She absolutely loves Brady (who wouldn't?) and he absolutely loves her. Our bi- weekly visits are now going to be every 6 weeks! We will miss seeing her as often, but we are glad that Brady man is improving so well! She is very pleased with his progress and has scheduled another EEG just to make sure everything is as good as it seems to be! She seems to think that the reason for Brady's all the sudden panic at bedtime is seperation anxiety!! She said 9-12 months is when they start this and that is right where he is. So now I dont feel like there is anything wrong with him when he just all the sudden starts crying when I put him down... and I can finally explain to Chris that he is not spoiled.. He is supposed to be doing that! He just wants his mommy! and there is nothing wrong with that!

Tonight Chris has invited all his family over for supper.. His sister and her kids are down from Southaven and his Aunt is back in town from work so it will be a good reunion. It will be the first time that we have all been together since the funeral (Chris' dads). I think it is good to keep in contact with your family so I am glad we are doing it! Chris and I just got back from Bay St Louis with my family. We went to the MS funeral Dirctors Association convention. We had a great time! The first night there, all 5 of my siblings and their significant others were there and my Memaw and we had a great time at dinner then at the Casino! It will take Brady weeks to get back on a schedule but we had a good time. So did he!

Till next time,

Jenny

PS- T minus 6 days till my 25th birthday!! Just a reminder!

Here is Chris and Brady in the hotel hanging out-

Today is all we have

Tonight Josh and Katie are keeping Brady so Chris and I can meet Trisha and Ryan and see Harry Potter!! I am super excited! I am also missing my baby already. Which has me thinking, what am I going to do with myself when my baby is healed, fixed, recovered, back to normal, just a typical child and I have to put him back in daycare. Now, I know this is what all mothers of babies go through when they first put their little ones in daycare for the first time.. but I'm not "all mothers" and brady is not just"any child". He is ...my baby, he is funny, he is laughing at things for no reason now, just out of the blue; he is smiling at me and bouncing at me when I walk into his room to get him out of his crib EVERY time; he reconizes me as his mom; he clapps his hands and smiles when I shout "YAY"; he is rolling around everywhere, until he hits a wall, then he rolls back; he is up on all fours rocking, just trying to crawl, he is sitting up all by himself, then just crashes back for no reason; he loves the water, bath tub or pool; he jumps in his bouncer all the time! I think he would stay in it all day long if I let him; in the middle of fussing, he laughs; he never cries.. i mean NEVER cries! He is a happy child. He is my child.

Now, for those of you with children, you know these are normal things. But when something happens to your child, your infant child, and there is a possibility that none of those things could ever happen and they do... that's amazing. Every little thing that Brady does is amazing to me. Every little milestone is amazing. Every new thing he does is another reason (on the ever growing list) to give thanks to Jesus Christ. We thought there was a chance he wouldn't see, and he sees; we thought he might not develop, and as you read, he is doing great; Now we don't know what the future holds but I know who holds the future. God hasen't promised us tomorrow yet we are so quick to make "plans". I have never really lived for the day until I became a parent and now I live for every single minute. I cant wait to watch Brady grow and Prosper, but first I am going to enjoy every second I have with him. The same way I should live every single day of my life. We are not promised tomorrow.. Live for today! Rejoyce for today! Be amazed everyday! Life is too short and too fragile and too precious not to take it all in. If your not happy, get happy! If your sad, get glad! If you depressed, snap out of it! Today is all we have.. Today is all we have. Why dont people get that? Be thankful for what you have, be grateful, be compassionate, be pleasant, be respectful, be positive... Love your neighbors, Love everyone.

By the way, I think I must be suffering from PMS .. this just came out of nowhere! I guess it needed to be said. I'm glad he used me to say it.

Because he lives, I live.

Jenny

Home from Memphis

We got home Friday from Memphis (earlier than we thought) and Brady is doing great! He was hooked up to his EEG leads fror about 48 hours and was recorded the whole time, (VEEG). That crazy kid of mine did not have the first spasm or siezure the whole time he was hooked up! But they played with his medicines and we even cut some meds out completely! Dr. Wheeles took him completely off his Phenobarbatol and Topamax and started him on Depakene (the liquid form of Depacoat). He also gave us a new ACTH schedule that will have Brady getting off his ACTH in 2 weeks!!! We should also be getting off the Hydrocortizone and Prevacid at that time too! So that will be a total of 5 medicines that Brady will be off in 2 short weeks if everything goes to plan! What a blessing!!! I dont know that I am going to know what to do with myself if I dont have to give him medicine at breakfast, lunch, and dinner! I hope this works and the Spasms go away forever and never come back!! I pray they dont evolve into another type of seizure also! I Pray this is it for all of that!! I pray he gets his personality back, he gets his developement on track, and he continues to grow and develope normally as a health boy would. We will follow up with our neurologist Dr. Parker Thursday but we will go in to check his levels monday and again the following Monday. We should go back to Memphis to follow up with Dr. Wheeles after we take him off the ACTH. I pray we go back with a different child.. completly healed of IS forever! In Jesus' Name.. Amen!

Here is Brady when they were taking him down for MRI.. he is about too big for this little newborn bed, dont ya think?

And here he is in his room.. EEG leads on his head, and IV in his foot.. sitting up in his stroller!

Memphis Bound tonight!

Here's a quick update on my little man ...Well, he has started having the spasms again. They have been gradually getting worse over the past couple of days so we have gone back up on the medicine that we should have already stopped!! (little frustrating) We are back up to the starting dose and everyday again. Our great Dr. Parker sent in a referral to Le Bonheur Children's Medical Center in Memphis, TN yesterday morning and we got a call this morning saying that they just happen to have a cancellation for tomorrow and asked if we could come on up... oh, by the way, the next appointment was not till late July, so this was a big deal. Oh yeah, and it just so happens that the Doctor on call all week just happens to be world renowned in his field of Pediatric Epilepsy and he come highly recommended from or Dr. here. And Chris' mom has offered her van for us to take up there to make the ride and loading and unloading much easier and Chris' cousin Katherine has offered us a place to stay tonight when we get there... (Coincidence ??? I think not) It seems like God has his hand in this one big time. It is obvious that that is where we need to be this week so we are packing now! We have to be there at 5:45 IN THE MORNING!!! for the start of many test.. MRI and EEG tomorrow morning. We will be staying in the room with him all week (4-7 days). The rooms are equipt with beds for 2 adults, a fridge, and microwave so we dont need to rent a hotel or anything. Chris will be taking us up there and getting all the info tomorrow and then my mom will come up to stay with us to help out with Brady.. He will be hooked up to his EEG leads for a while and I am not to sure how that is going to work.. now that he is rolling around and pulling at things. We are hoping to be back Sunday with some new Plan of Action. So please keep us in your prayers, expecially my Brady. We want these siezures and spasms to stop!! Pray for us as we travel, my mom too! I will keep you updated with any news as soon as I get a chance. Pray Pray Pray!

Jenny

Dancing Queen!

This is my niece Arrington dancing away to Luke and Savannah singing YMCA on American Idol Karaoke! This video is going to be about the same for her as my perm video was for me! Enjoy...

Here are a few more of Arrington trying to get Brady up to play with her.. He is just as big if not bigger than she is now and she dosent understand why he wont play!! :)

Bitter Sweet

So it seems I have let my blogging get behind so I will attempt to catch you up with this one. This has been a very up and down month already! Up in the fact that Brady is doing better. No spasms, had a much improved EEG taken on May 13, only 3 weeks left on this medicine. Down in the fact that also on May 13 we lost Chris' dad, my father-in-law, and Brady's pawpaw to cancer. He had been battling and I do mean battling this cancer since the week of our wedding a year and a half ago. Mr David gave it all he had. He did what the Dr.s said, he did every kind of chemo they had to offer, but after all that chemo he still lost a very long, hard, courageous battle. We are so happy with the memories that we have with him. (Chris' 29 years, my 8 years, and Brady's 7 months of memories) We are also so very glad that we have great pictures of him with Brady. Mr. David will never be forgotten. Brady will know all the great things he did, and how much he loved him.

This is Mr. David with Brady and Wyatt (Brady's cousin) the day after Brady was bornMr. David, with Chris and Brady Thanksgiving 2008Brady with PawPaw in February 2008The last pictures taken with them together 18 days before Mr. David passed away.

These are great memories for Brady and for our family. Mr. David truely loved Brady and we are truly appreciative of the time we each got to spend with him. He will be missed greatly.

In another note, Brady is doing extremely well with his treatment. Like I said before, no spasms! His EEG was not 100% but it was much improved. They are still seeing some spikes in different areas of his brain but his neuroligist says that is to be expected. We have taken his dose down yet again to .12 (from .37 to .30 to .24) and next will we will drop it to .6!! which is just a drop! He is truely a miracle baby. The Doctor's had told us at the beginning of this journey that we could expect some REgressing in his development, loss of muscle tone, and just an overall not developing on tract with others his age. Well, I am here to tell you that Brady has started Rolling over!, he is trying so so very hard to crawl and sit up! He is doing everything that he should be doing and we couldn't be happier! God is in controll of my son, not the medicine! Continue to Pray because HE is hearing your prayers, and HE is faithful to answer them. Here is a little more about what all has gone on this month.. in pictures...

Brady getting pushed around (already) by his cousin Arrington

Brady's first 4-wheeler ride with Poppy! He is out like a light!

Brady's first time in the pool and he LOVED it!

Brady with his GeeGee and Aunt Didda

Brady with "Cole" and Katherine

Brady in his Daddy's old high chair at his GeeGee's house

Chris, Brady and me Mother's Day 2009 at his Baby Dedication service

Happy Mother's Day in deed!

Brady with Nanna and Poppy at lunch after church on Mother's Day

All the children (except Josh) Mother's Day 2009 with Mom and Memaw

Brady with his Best Friend Forever Sawyer!

Brady and me making Chris a meatloaf .. I hate meatloaf and I have never tried to cook a meatloaf, but we wanted to make daddy a special supper and I think we succedded!

Brady had a hand in preparing the meal too!

And here is the end result! Love my bowls?!?!? Me too! thanks GeeGee!

Chris and Brady in a stare-off! Wonder who will win?

As you can tell, it has been a crazy few weeks. We will go back to the Doctor the first week of June, but I will try to keep you updated on what goes on till then!

Take Care till then

Jenny

Need a good Laugh?

OH he is just going to hate me one day!! But Chris saw this at Northpark last night and had to buy it!! I bet you cant look at this and not smile :) Just a smiling like his momma! HAHAHAHAHAHAHAHA

March of Dimes 5k

Ok.. so for those of you guys who know me, you know walking isn't my thing... sweating in any form or fashion isn't my thing. I am all for inside and air conditioning! But when asked by my sister to do a 5k walk for the March of Dimes, for some strange reason, I agreed. March of Dimes is for all of those sweet preemies that spend the first part of their tiny lives in the NICU without any control over what happens to them. Now my Brady was not born early, but for complications that were out of our control, he did have to spend time in the NICU. We were not in then NICU very long, but nevertheless, we were still in there and I know the heartache of a parent who has to do the "3 minute" scrub down just to go see their precious baby. So I decided to do the walk. To help raise money and awareness for the March of Dimes organization. Brady and myself went to Ridgeland with my sister Allie, Sister in Law Brittany, and her two children Riley and Halea. After meeting up at the Baptist Hospital tent and doing a quick warm up (not really) we started walking from The Renaissance on Highland Colony Rd and walked 1.5 miles up Highland Colony Road and then 1.5 miles back!!!!!!!!!!! While pushing Brady! Allie Draging Riley, and Brittany hitching a ride with Halea because she got a Blister on her foot!! Haha! I just kept repeating under my breath, "this is for the babies... all those sick babies" WOW! I am telling you! If I am going to continue with with whole walking thing (and that's a big HUGE if) then i am going to need some new shoes! I even had a Blister at the end of the day! But God is good, it was overcast and Breezy that morning.. oh did i mention that I had to be there at 8:30! I wouldn't even recognize me if I didn't know it was me :) I am glad I did it though. And I know Brady is glad we did it too!

Allie, Me, Brittany, Riley, Brady, and Halea Before the walkThis is Brady's special friend Brandy. She was his nurse when he was in the NICU. It was great seeing her again and I know she was glad to see Brady. She is pregnant with her second child so Congratulations Brandy!! (from Brady and me!)

Riley and Halea with Brittany in the Ambulance. It was there incase people like myself didnt make it! haha.. Kidding! (or am I?)

Mr. Brady after the 3 mile walk.. Dosen't even look out of breath does he? He is acutally just waking up!! Lucky boy!

Till next time

Jenny