Wednesday, July 29, 2009

17 Months & More Prayers Needed Please!

Two days ago my (previously tiny) baby boys turned 17 months and I'm in disbelief of how big they are and how far we've come....and how the time has flown by! Tonight as we were celebrating my Dad's birthday, the comment was made that my babies can no longer be called "babies." My dad said since they were now attempting to be as independent as possible, that they could only be considered "toddlers". Not only are they doing the usual running, jibber jabbering, climbing, darting, not listening to mom, etc., they are now DEMANDING to feed themselves.

These little Monkeys are finding feeding themselves to be a fun adventure. I decided to give it a try about a week ago and once again, the boys haven't looked back. Shocker! And, surprisingly I'm having fun watching them. It's pretty cute to watch them try to get food on their forks or spoons. What's even more adorable is that they'll usually take a large amount of time trying to scoop up the food, and then end up using their other hand to actually get the food in their mouth. In the meantime though, I have actually found that I can use this time to my benefit by either eating with them, cleaning or unloading the dishwasher. So, thanks guys!

In the meantime, my sweet Jakie STILL has extremely low platelet counts. Every week, at least, we head up to Children's Hospital to see our Hemotologist and draw his blood. He's gotten VERY aware of the situation and usually starts to get extremely quiet and on edge as soon as we get to the office. He knows the woman who draws his blood and as soon as he sees her he starts to squirm. And when I sit down in the room with him, in that chair...the tears begin to flow even before the needle touches him. Oh it's so hard on all of us. Even Jonah starts to freak out because he's watching Jake meltdown. And every week I wait in anxious agony for his counts...and every week my heart sinks a little further with the news that it's still so low. When are we going to be done with this ITP!???!!??

As much as it rips out my heart to see my little preciousness covered with bruises and remain in constant fear of his fragility, I am in awe of the blessing of ONLY having ITP. His Hemotologist is located in the Center for Blood Disorders and Cancers at Children's and I have seen several tiny little bald people walking around, some even being carried by a parent they are so young. How the site of this just absolutely makes me want to drop to my knees in that hospital and PRAISE GOD that Jake doesn't have cancer. I cannot imagine having to hear that diagnosis for your child, let alone living with it every day.
Jake's count this week was another dangerously low level, 12,000. A normal level is 150,000-400,000. So you can see that we have a little boy who has a tough situation right now. Please help us and say some prayers for Jake that he will get through this quickly and without further issues. Thank you!!!!! In the meantime I'll try to relax more. However, his doc did say that she wants him doing low key activities indoors as much as possible. She obviously has never had 17m old twins! And Jake especially LOVES to run and play and be a crazy little boy. That's what he was built to do. Trying to cease this inate behavior is not only hard, it's nearly impossible.

And, for the last few weeks, in an effort to give both the boys that outlet they need to run in a safe environment, we've been heading up to Open Gym! At least there everything including the floor is padded and the dudes LOVE IT! I don't know if we can continue to do this now that we've been told to keep it to low key activities. That makes me sad, but we'll do whatever we can to keep our baby safe and out of trouble!

Jake playing soccer with Granddad. It's just amazing to me that he actually knew just what to do with a soccer ball. AND, he's good at it!
Run Jojo!!
Come on Granddad!
I'm having so much fun!

I loved watching Jake attempt to figure out the trampoline, he sorta bounced but his feet never left the tramp.
And just so we don't leave out anything on our sweet Jonah, the week before last I actually saw him look for me amongst a room full of kids and say, "mama" several times before he finally scanned the room and saw me waiving at him. Thanks for that sweet thing! I have heard him say this before but never really knew if he associated mama with me. There's no doubt in my mind now. And, also, I wanted to say how sweet the boys have been to eachother lately...for the most part. They definately spend some time hitting, biting and throwing object at eachother BUT they also hug, kiss and bring eachother things they know the other needs like milk or a blanket. It's so cute to watch. And I think Jonah is especially good at this. And he has been such a trooper being there for his Bubba when we're at the doctor's office. He provides a special distraction that I feel is very comforting to Jake. So thanks baby!

Sunday, July 19, 2009

Prayers Please!

My boys are well....deeeeefinately boys. And I knew sometime we would probably be rushing to a hospital for some mishap. I didn't realize we would be doing it so soon. Jake is still dealing with his ITP (for those of you who are unaware of what that is, please refer to previous posts). We have seen a Hemotologist twice at Children's in Plano. His counts have not changed one bit and I'm so discouraged :(. Well, Thursday he bumped his head a few times from tripping and/or trying to get down off of things he's not supposed to be climbing up on. ugh! But he seemed fine afterwards, but I am always keeping an extra eye on that guy lately. So, it was very alarming to be running towards his bedroom Friday night at 11:15pm only to find a scared, shaking and vomiting little boy.

Since vomiting was one of the signs that there may be internal bleeding, I immediately called his oncall dr and she had me come to the ER to get Jake a catscan. When 3am rolled around we were FINALLY able to head home. He was fine but the experience of it all left us wishing this ITP would become a distant memory sooner rather than later. Jake was SUCH a trooper even though he was tired and scared. He kept asking for his "Jo Jo" which just melted my heart. And true to form, because I can't go ANYWHERE without running into other multiples, our nurses were identical twin sisters...no I'm not joking.

So, please say prayers that we get over this stuff soon! It's no fun at all and poor Jake's head looks like it's been through the ringer! Sorry baby boy :( Don't even get me started on the rest of his body. Ugh, he just looks beat up and I know that it's not the case...but it makes me wonder what others are thinking when they look at him. How could they not be thinking the worst.
Sweet Jakie playing with his Grand Dad
GG sneaking in some kisses, muuuah!
Here is a brief sit after storytime at the Library...cuties!


Mom n Aunt Lo in the pool with the little fishes.


This photo is a little hard to explain...those are their Grand Dads socks. And for some reason they LOVE wearing his huge socks around pulled up to their thighs. Strange but super funny.
I have a LOT more photos to come. We've had some really cute moments lately with feedings and Daddy's birthday. So hopefully I'll get a chance to do that soon!

Saturday, July 11, 2009

Granddaddy!!!

I just LOVE the relationship that the boys have with my side of the family. God knows I wouldn't be where I am today without their help and support that is constant. It is something special to see the love that the aunties, their GG and Granddad pour out. These boys are very lucky! And it's just fun to watch how much these boys love back. It is truly heart melting. However, there is someone that is so special in their lives that I'm not sure where these boys would be without him...their granddaddy. Granddad spends most of his free weekends with his boys and they will run and leap to greet him. They have on many occasions even leaped out of my arms to get to their granddad. They just absolutely adore him and vice versa.

So I managed to capture a really cute moment with them just messing with each other but I missed :( the good stuff. Granddad broke out his Donald Duck voice and the boys were belly laughing everytime! It was obviously hillarious stuff and I wasn't able to run and get the camera in time exept for this one last video...which by now there were mostly over.

But I just wanted to say thank you Granddaddy for spending so much of your free time helping me wrangle them up and entertain these little busy bodies. And thank you for making a fool of yourself so my boys can get the extreme giggles! And thank you for being their favorite wrestling partner. They are so lucky to be so loved and obviously the feeling is mutual.


Granddad a few weeks ago with pants on his head...funny guy!

Jake sneaking up on his Granddad ready to pounce.

Jake is mid-pounce while Jonah is so obviously too comfy to notice.

Guy talk. They're probably discussing the upcoming Cowboys training camp or something...who knows.
video

Wednesday, July 8, 2009

Lots of Updates: Both Good & Bad

So, it has been a while since I've been able to post. I hopefully am going to be able to catch us all up on the happenings. Since Father's Day Neal and I have had the opportunity to take a 4 day weekend trip to San Diego without the boys. My mother was on Primary Guardian duty for that time and we are VERY thankful for her time and being the best GG we could ever ask for. The trip was good, however, when I left the boys were slightly under the weather with runny noses, mild fevers and the overall poos. This of course meant that I had the overall poos as well. I didn't really feel great when we left but I had hoped it would improve. When we got there though, Neal started running a fever so our first night we didn't do anything but eat and sleep. BUT, we got 10+ hours of sleep each night and I know I hadn't done that since I was pregnant!!! After the ickies wore off, we explored the city, shoppe and had some good food. It was a relaxing trip. San Diego is beautiful and the weather is absolutely perfect.


Since then, the boys have improved in health as far as their runny noses and fever issues go. They're cutting their molars every so slowly though and that is causing all sorts of fun! However, since we've been home, we have had another development that is not nearly as much fun as the teething. Jake has always been a bumpy headed kiddo. He's all boy and since he's been on the go and crawling at 6months, he has had the bruises to show for it. Lately though, my family, Neal and I have noticed that he has considerably more bruises than normal. Yes, he's running, climbing and jumping just as much as usual if not more, but Jonah, who is keeping up, didn't have as many purple marks as our Jakie. So, we collectively thought there may be more to this and I made a doctors appointment soon after we got home from SD. We got to see our Pedi last Thursday and he determined that Jake did in fact have something that wasn't normal. He has what is better known as ITP.

ITP is a disorder of the blood that involves the immune and blood clotting systems. ITP stands for Immune or Idiopathic Thrombocytopenic (a decrease in blood platelets) Purpura (purplish areas of the skin and mucous membranes). As far as experts know, ITP occurs when a person makes antibodies, which attach to his or her own platelets. Thus, the boy's immune system start attacking its own platelets because it is confusing them for a virus or other foreign invader. A normal range is 150,000+. Last Thursday, Jake had 41,000. Our Pedi referred us to a hemotologist at Children's Hospital here in Plano. Luckily, this hospital is simply minutes from where we live and it is a brand new facility.

Neal watched Jojo while GG and I took Jake for a Tuesday (yesterday) appointment at Children's. The people there were AMAZING! I had zero issues with anything...even though we were there for 2.5 hours. Jake did great having a lot of blood drawn and being poked and probed all morning long. We got information overload on the who, what, when, where and why's of ITP. The Hemotologist believes that it is ITP based on his labs and physical bruises. Also he has what looks to be a pin-prick red rash that is called petechiae that is very common with ITP. The disturbing thing about our visit is that now Jake's platelets are down to 13,000. I was SHOCKED they had dropped so drastically in just a few days. The dr. said she was not surprised and that it was considered normal with his condition to drop drastically low.

For now, since the treatments aren't cures but merely bandaids, the dr has suggested monitoring him closely and checking his levels weekly to see if we need to look at the treatments. Unfortunately, the treatments do have some high risks associated with them and I would rather not have deal with more issues.

The good news is that this condition does eventually clear up on its own usually within 6 months. It could become chronic and last longer but the chances are slim. However, if within that time, Jake were to suffer a good thump to the head or get in a car accident, we could be in trouble. So, this is where God and prayer comes in. I have already been somewhat of a wreck trying not to follow him around with a pillow all day. This is unrealistic with one let alone two to physically be next to him every second of every day until he gets better. BUT, that is all I want to do. By the time I lay him down to sleep I'm physcially and emotionally drained. I just pray, and I hope you will too, that we have no other issues before Jake gets better. And I also want to pray that he starts getting over this soon!

However, with that said, I am SO grateful to God that we aren't dealing with Lukemia or other serious issues. I don't even want to think about a diagnosis so devastating to hear, but at the same time, it was somewhere in the back of my mind when I made him the first appointment. THANK YOU LORD!

And on a lighter note, these boys are SO busy trying to talk it up these days. I was trying to teach Jake the sign for Thank You yesterday and when I asked him to "say thank you" he didn't sign it...he said it! My mouth just dropped open. And since then, he's said it a couple of times, not even prompted!! Good boy. Jonah is definately breaking out of his shell some. Today at the library he decided he was going to be the official greeter and said "HI-EE" to everyone that was coming in the front door. SO stinkin cute. Their "hi-ee"s are just one of the highlights of my day. And their baby chatter so mimicks conversational speech patterns. They are working on animal noises and mimick the monkey, cow and of course the doggie. Jake has begun saying "Jo-jo" and Jonah has been trying to say "Jakie" and he's very close. They still sign a lot. They finally learned to incorporate Please into their signing for more. There "please" is just rubbing both hands up and down their chests and is just adorable. And we're learning body parts. Noses and belly buttons are staples. The mouth, ear and hair are sometimes remembered and for some reason, no one wants to point to their eye ever...but maybe it's because they just don't want to end up with a finger in their eye. Who knows. Smarties!!

I bought the boys some crayons and large coloring books for entertainment while we were away. Jonah is mostly interested in how they taste as opposed to how they work.


Still checking to see if the crayons are tasty while Jake is creating his first masterpiece.


Still seeing if the black tastes different than the red while Jake keeps coloring away.


The boys don't really watch Baby Einstein videos often but when they do, they definately are able to sit for a few minutes and take it all in.



So cute...Jake put his head on his bro's lap while watching the video. Sweet boys.


I thought this was pretty cute that Jonah actually is smiling in this photo...and Jake leaned forward to get in on the moment.


Hey mom! And yes, Jonah is FINALLY saying "Mommy"!! Thanks Jojo.

My busy boys enjoying breakfast.

I love this photo.

A sleepy Jakie with his Daddy.

And the clincher...the boys finally gave eachother a kiss the other day. I know they will probably hate that I documented it on a video (which is too big to upload). But it was precious!