Friday, March 27, 2009

Lots and Lots of Changes

So lots of changes to report…. Things have changed quickly and now I am waiting for tests to be scheduled and to see if changes helped.

But before I start on Zach let me tell you about Aden… this boy has such a sense of humor, he has us laughing 99% of the time. I can’t believe the things that he has picked up on and how his connects things, it is amazing. He has decided that he is ready to go to school and every school that he is sees is “his School”. We are looking for a k-3 preschool class but haven’t found one that we like and that we can afford, so I am praying that God will let us know what to do. He is ready and I am really praying that wherever God wants him that we can find it and that we can get him in so next year he can go to school, he wants to go NOOOWWWW, as he says it.

Zach is doing well, we have had several doctors’ appointments but overall things are really well. I think that he is on the rebound; I am praying that it stays for a while. We recently dealt with a blown ear drum with infection and the suctioning out of both ears. Things are better with that. We went to the Neuro and they ordered new A-AFOs so soon you will get to see new cool braces, she also ordered a MRI that we are still waiting to be scheduled. He also went to the GI doc, this appointment was long but it was great. Zach is now on continuous feeds and seems to really be doing well on them. He also is being scheduled for more testing and we might have to go out of state for even more testing sometime soon.

One of the coolest things is that since Zach has been feeling a little better he has been walking more independently, while he still gets tired and his legs still give out on him, he is able to walk a fair amount now. Recently he went and stole his brothers recorder and then headed down the hall with it, he was laughing and smiling the whole way. What do I do as a good mother? I stopped and took pics, it was the 1st time that Zach has done this, the 1st time that he has taken anything from his brother and ran away or waddled away! Of course when Zach saw the camera he stopped and played for me and then he took off again since Aden was coming after him.
I was delighted!

Monday, March 23, 2009

So the wait once again...

Waiting…. It seems like we are always waiting for something.

1st I am waiting for a call back from the ENT, The doc called and said that YES I needed to bring him in and that they might have to take the tube out and we will have to evaluate if he needs them again. However, he can’t schedule an appointment so his nurse must call me back.

2nd I am waiting for the neuro to schedule the MRI of the brain and spine with spect that we are supposed to have Zach go through. I was told within a week they would talk to me and schedule it, today at 1:30pm will be 1 well.

3rd I am waiting for appointments that we have this week. I have an appointment, Zach has OT, Zach has a GI appointment this week and I am sure at any moment things can be added onto this schedule. Not to mention that we have a MRI and several other tests that need to be scheduled and that can be scheduled at any moment.

4th I am waiting to go pick up pics that we had taken of the boys; I can’t wait to bring them home and show Adam. I took the boys and Zach wasn’t having a good day but we had a wonderful photographer who was able to get some great and wonderful pics. I can’t wait to see Adam’s face…. Our boys are growing up.

5th I am waiting for our FSA to send us the checks so we can pay some of the medical bills that we have.

Besides all the waiting I am dealing with several situations that I want to scream about:

1. Dealing with people who think that they should tell me what to do. I was walking in the parking lot with Zach in my arms and some lady started screaming that I needed to put a hat on Zach and that he needed a blanket cause it was cold and he was little. Granted it wasn’t cold, I was in short sleeves and flip flops and she was in capris, sandals, and a short sleeve shirt. Makes no sense.

I also am tired of people saying that Zach doesn't need to be on formula or on babyfood anymore since he is 20 months. Goodness if I could not give it too him, then I wouldn't, I mean who wants to buy expensive formula and have to plan to have everything that their child consumes with them because you know that he won't eat normal things. Who wants to buy babyfood or puree foods just because. Sigh, people don't get it. He is 20 months and 15 pounds, he doesn't want to eat table food and he is 15 pounds because of the formula. He can't be flipped to milk, he has a milk protein allergy. Why does it matter anyway?

2. The constant situation of I don’t know and wait and see are going to drive me nuts… I mean I know that scheduling takes a while but goodness let’s get this show on the road please. Part of it makes sense, we are trying to get insurance to cover certain things and that takes time.

3. Looking for a preschool for Aden, I haven’t found one that I love, I want him to go 5 days a week, he is ready for it and the one that I like is 4 days a week. I am going to several more to look and see if they might be a good fit for Aden.

4. I am also so so so tired of dealing with people that say that Zach shouldn't scream and that we are babying him and that is why he isn't talking or walking much. That what we do is making him lazy and where he doesn't want to do anything. Oh my if I could only figure out what to respond to this. Yep, I want to take Zach to PT, OT and ST. I want to see him get so frustrated that he screams and has a meltdown. I want to see him suffer.

Saturday, March 21, 2009

A Day in our lives....

So you know when you have something planned that you really want to do that things go crazy before right. Well, we were given an AWESOME opportunity through Lekotek to go to the Atlanta Zoo, they were giving us 3 tickets so we could go and enjoy it and have a family outing. We were excited; Aden was excited beyond what I can type here.

So yesterday we went to our Lekotek play date and both of the boys have a great time, Zach and Aden both played the whole time that we were there. Zach got to play on the touch screen computer and for the 1st time he was really playing on it. He was touching the balls to make them pop the balloons it was an AWESOME thing to see. However, the 1 hour that we were there wore him out so we came home and went to bed. At 5:02pm I went and got Zach up out of his crib since he was crying to walk into a crib full of blood. I mean blood all over him and all over the sheets and the crib. I quickly looked over everything to realize that it is pouring out of his ear. Of course it happens 5 mins. after our peds office closes. So we clean him up and since thre was no blood so we were okay to wait till this morning to take him into the peds office.

Fast forward through the night and Adam went in and got him so he could get a hot bath before the Zoo (It loosens up his muscles allowing him to walk a little longer) and he finds Zach’s face bloody again. So I quickly call the office and we get him into them for an appointment. The ped comes in and can’t even see in his ear because there is so much blood, they don’t have suction small enough for his little ears. However, his other ear is great, his lungs are great and he sounds okay. We get antibiotics and antibiotic drops and we quickly head to the Zoo.

We last went to the Zoo in June of 2008, Zach at that point could care less about it, he didn’t really like it. Well this time we had the wheelchair (so he was better supported) and we were dealing with some improvements. Oh it was wonderful, When Zach could see the animals you could see this WONDERFUL huge smile on his face. It was hard for him to see a lot of them but we tried to make sure that he could see them all. He got to see a lot and Daddy helped him see a bunch. He got to see the baby panda (6 ½ months old) and he loved to see them wrestle. Aden and Daddy loved to see the Giraffe and we got to see them walk and 2 of them met. I loved to see these itty bitty yellow frogs and I think that Zach loved the lemar but mostly because one went right across his view so he got to see it move. He also enjoyed seeing the mamba but mostly because it was moving a lot too.

It was a wonderful trip… THANKS LEKOTEK for letting us go!!!! It was a blast!

Tuesday, March 17, 2009

So what now...

What do I type? What is the update for those that are praying and thinking of our family? I have NO idea what to write and what to say so I am trying to just type so I can get some things off my heart and out of my mind.

Aden has decided that he is going to be a destructive 3 year old… he decided to take the scissors and make a scarecrow out of his drapes. It was hard to not get super upset; I mean he cut holes in his drapes. I think that it was partially because we are working on learning how to cut and partially because a bunch of shows have been talking about making a scarecrow so he wanted to keep the “bad stuff” out of his room. He is trying to give up naps and he is also having issues with a sinus meds, the whole thing is making him mean. He isn’t a mean boy he is sweet and loving and concerned.

We have noticed something about Aden which is breaking our heart… he is starting to really realize that Zach is sick. He is telling us that “Zach is going to have to go to hospital” because he is sleeping a lot. Whenever one of us coughs he begs us to not have to go to the hospital. It took me 30 mins the other day to convince him that I was okay because I was coughing. It is a hard reality knowing that our awesome and loving 3 year old is worried about his brother.

Zach has been having a rough couple of weeks. He has been sleeping a lot and acting like his legs are hurting him. We went to Zach’s neuro appointment the other day and we learned that it is going to be testing time for Zach. We have to do a special MRI of the brain and spine and we have a referral into a new doc ( I am praying that we can get in pretty quickly, this doc is one of the few of his specialty in the country). The Neuro ordered new AFOs for Zach and also told us that PT/OT was very important and that we needed to work on strengthening his legs and the sensory issues that he has on his legs.

It is hard because we are talking him to OT every week and to ST every month and to then we will have PT bimonthly. All three of these of these are being done privately which means that I am going to 3 different locations and in all 3 I can’t take Aden. It is hard on me and on him needless to say that it is hard on Zach. He cries and screams through most of the sessions. I pray that it will get better, on a good day nobody would know that he is sick or having issues but on a bad day, he looks horrible. However, even on those days he still looks like a little boy that can’t be that sick. I can’t explain to people that he is that sick, that he is sleeping 20 hours a day and that he doesn’t have the endurance to do anything but that the doctors don’t know anything, that the tests are normal.

I don’t know what I feel about it all, My head is spinning because a doctor is listening to me and ordering more testing for him… finally and it is spinning because the road that we are on has been hard and bumpy and STRESSFUL.

So the week has been good, we have SMILES and we have lots of hugs and lots of laughs. I will hang on to those because even with all of the “bad things” that Zach goes through, I have finally realized that to Zach they ARE NORMAL~~~

Sunday, March 8, 2009

The Hospital Again

So After our wonderful yucky rash we had to go to the pedi because Zach didn't want to go the bathroom, well I don't know if he didn't want to go or if he just couldn't pee but whatever the case we went to the doc. We had orders to give him fluids and then to go to the ER if he didn't pee. So we of course made it to the ER, they did labwork and sure enough we got admitted. His sodium levels and one of his kidney functions was off.

Zach loved the view from his room, he got to see the ER entrance, which meant that he got to see lots and lots of ambulances. He also got to see lots of trucks and helicopters. Since he wasn't able to leave the room we looked out the window a bunch. The nurses loved having Zach as a patient because he was so funny and loved to take his medications, as long as it was pink or purple.

During this hospital stay I decided that I was going to try to be positive about everything and try to be more like Zach. Zach is always Smiling, it doesn't matter what the situation, he is smiling and shares the smiles with everyone. I decided that attitude is what I want to have and what I want to be known for. I want to be the one that is always smiling and is always postitive no matter what the situation is.

I finally decided that to ask if Zach could go out of the room and if he could get off of protocol and he could. Zach was delighted to be out of the room and to spend time with all of us. He went to the playroom with his brother and with Pa-paw and Grandmama. He loved to walk the halls and smile at all the children that were there, several of which had been there 6 months or longer. We would sit and talk to one of the girls that had been there a long time but had no vistors, she was about Zach's age and they loved looking at each other and they communicated even though neither one of them could speak a word.
After all that we did I was able to get Zach into the bathtub and find the only toy that I could a clear cup and we played and played and played in the tub. He smiled and then decided that he was going to made a cute face and so I decided that I couldn't tell the story without putting this pic on here.
After the bath he decided that the cabinet was made to eat in and so he climbed in and ate his cheerios and pkayed in there for a while. He loved to close the doors and to have a great time in there.
I couldn't do a update about the hospital without talking about Aden. I am totally amazed and stand in awe on his ability to be flexiable. I have always believed that God wants his people to be flexiable, but when I look at Aden it makes me want to strive to be even more flexiable. He was able to stay with Uncle Al and he had a great time, he got to play outside and enjoy himself. He came to the hospital and enjoyed every min of it... he loved playing the the "Hawks" room and he loved the basketball goal there.
So for now we are at home and we are a family again!!! Zach has basically recovered and we are enjoying all that we can do now that we are having time to do things.

Monday, March 2, 2009

So does it end

So after yesterdays day going so well, today wasn't so good, it had great moments and was great for Aden but for Zach it wasn't so great.

Aden had a great time, we found Batman and Spiderman On Demand, I had no idea that they were there and so for the 1st time he is watching them. Maybe not the best but it is a treat and he is loving it. Then he got to play in the Moody pool, aka, the bath tub. He loves playing in the bath tub lately.

Zach had to be woken up, he got a bath and that is when I found the wonderful rash that you see above. So far the word is he ate something that he is allergic to or he has yet another virus. The one saving grace no puke yet. Although he isn't wanting to eat and all he is wanting to do is sleep, snuggle and cuddle.

Have you ever tried to do clothes, esp. blankets with a 19 month old that wants to cuddle and snuggle with all of them.

So tomorrow is going to be a very hectic day.... OT, PT and then based on tonight we might have to go to the pedi as well. Sigh, does it end!!!

Sunday, March 1, 2009

A Good Day

So Today we woke up and I thought that we were going to have a day that was just okay. However, before we could get done with church we had a suprise, it started to snow. Now Aden has seen snow but Zach hasn't, last year he slept through it and so this year I was determined that they both were going to play in it. While at church, I could hear Zach screaming, he was trying to get them to take him outside but they were worried that he would get cold, I quickly gave them permission to take him out, He loved it!!!!

We came home and ate quickly and bundled the kids up and we went outside. The boys loved being outside and after a few mins Zach fell and since it was wet and cold he wasn't happy and then it was slick and he couldn't get up. This meant that he was done. Aden loved the snow, he played and played, he threw snow balls and loved it all. Aden even tried a snow angel!!! I was also mean and I dumped a ton of snow on him.

Then I got to cuddle and play with both of my boys and we got to spend time as a family, today was a good day!