My strong determined BOY!! Halloween 08 pics (physical therapy)

Even though he continues to have seizures, Joshua remains determined. After coming back from his last session of hyperbaric therapy he has shown even more progress. I know it has also helped that we have taken him off some of the many meds he was on. He has better head control and even wants to stand now. He has also been moving his legs in the crawling motion. Joshua continues to be our miracle!

Keep us in prayer for the following.
The next thing we are going to try is the ketogenic diet (for the seizures). He also continues to throw up and will be getting an endoscopy done to see if there are any allergies to the milk. This will be done on Nov.11. After this I will make my decision whether or not to take him back into surgery.

Healing Hurt

As I was trying to sleep tonight I can't keep my mind from thinking about the sweet little angel Kaden. My heart aches and I can't seem to control my emotions right now. I know he is no longer suffering. He is now having the time of his life probably doing everything he didn't here on earth. How Great, I think about him playing with the other angels. He's walking along holding the lord's hand as he swings his little arm up and down just like father and sons do. He is probably right now taking in all the beauty the heavens have to offer. What a comfort to know the peace that he may be experiencing, finally rest. Yet, here we are on earth hurting for him.

I was thinking about when Joshua was born. It almost feels like we were minding our own business living our lives and all of a sudden I was stabbed in the heart. At first it hurt a lot and I felt everything. As time went on I still felt it but was able to still tolerate it. Still certain days I realize it is there and feel the pain all over again just like it just happened. This happens sometimes when the little things trigger it (like other children Joshua's age). I'm ok though. I just get over it and live with it hoping I guess it gets better. Now I think about those I've met who have lost thier children. After suffering so much, I think about how they might feel. Even though they know their child is in a better place. Does it feel as though someone finally took the object out and they are now just with an opened wound, hurting??? After time passes, does the wound close and you are just left with the scars of memories or the hurt you carried for so long. Does the wound close but at times you still hurt it accidently and it bleeds? I know the lord heals all wounds, but I also know we are human. It can seem like a lifetime for us to sometimes feel like we reach "understanding". Lord, be with all the mothers who hurt tonight. Whether they are struggling through a loss, struggling with thier childrens illness, or just struggling to live day by day.

More HBOT

We just got back from getting more hyperbaric treatments. We spent a week in San Antonio and Joshua recieved a total of 9 treatments this time. So far he's had a total of 49. Since getting the first 40 he has shown progress. He is crying now and showing us new movements. His therapist are very impressed with him. We've also had some of the specialist comment on how "good" he looks (very alert). The only set back we've had is he is still throwing up and his seizures have increased. They took him off of some medicines and that is when we saw the increase. As far as the throwing up, I don't think the fundo is tight anymore and am planning on seeing the surgeon again. He might need to go back into surgery. I'm very pleased with his progress, I just wish the seizures would stop completely. He now cries when he gets a really strong one. I won't stop believing, praying, and having faith that somehow it will get better.

I've looked into stem cell treatment and eventually wanted to give him this opportunity. I've heard so many good things about it. As a matter of fact, I met a mother who said it decreased her child's seizures. I also read about another that totally stopped her sons seizures and also has improved his mobility. I am very encouraged. This procedure is very expensive. I will keep you posted.

Yesterday I recieved notice that my friend's baby went to meet the Lord yesterday. He was about 10 months old and he went with the lord in his sleep. He had many health issues just like Joshua. I am so heartbroken. The little angel's name is Kaden, please pray for his family. They are so dear to my heart.

Forward Backward Forward Backward!!!!!!!!!!

The last two weeks Joshua was doing awesome! He was showing us new movements, hardly had to be suctioned, and showing off his vocal abilities (crying!!!!). So So excited!!! Then...Tuesday secretions increased and he started to spit up again. Wednesday seizures increased and then last night high fever! Here we go again. I am so freaken tired of this cycle. It feels like we are going back and forth. I have not been at my best these last couple of days because it is so draining. Also, these dumb glasses we are suppose to get have been such a headache. First we couldn't find them, then we were told we would not be covered, we then were notified we would, and now they said no again. I think today we finally cleared up the mess and we are waiting for the final OK. Still NO GLASSES yet. Again back and forth even with this! TIRED. Can't anything be easy? Even the things that ought to be easy aren't. Make Sense? I am getting ready for another appointment today (just came back from one)so here we go out the door again. Tony and I have been very stressed lately so please keep us in prayer...oh and of course most importantly Joshua.

Just another thing to add to the list?

He is doing a little better. If he doesn't stop throwing up by the end of this week we will need to see the surgeon again. He wanted to give him time just in case it is a virus of some sort. He is still throwing up though, randomly. Anyway, today we went to another appointment and they tell me he probably needs glasses. GLASSES??? So far, a couple of people say,"he will look so cute". OK, but it is just another thing to add to the list. I know I sound so negative right now. I just am having a really hard day today. Maybe it will help him with focusing.....blah blah blah.. Then again I got the speech also that it all has to do mainly with the damage that occurred at birth because of the lack of oxygen. I guess I need to shake it off today and tomorrow will be another day. I also didn't have such a great weekend either, so it doesn't help. I was around many little ones his age.....NOT HAVING A GOOD DAY. This is it for now.

Lift Joshua in Prayer

These last two days he has not been doing so well. I was so excited telling people at church Wednesday how great he was doing. Then he wakes up Friday morning with fever and lots of secretions. I've been having to suction him a lot and he has been throwing up large amounts (should not be happening because of fundo surgery--but may be because he is sick). I hate this!!! Again a few steps forward and now back. I just pray we don't end up in the hospital. So far tonight I've given him something for the fever again. He is finally sleeping peacefully. As of right now his breathing is ok, even though at times (especially when he throws up) I need to calm him down by suctioning or repositioning him. He seems to eventually calm down after I clear him up. If it gets worse or I don't see an improvement I will have to take him in. We have an appointment this coming week (Monday)and hopefully he can be seen then.

GET READY>>>>SET>>>GO

Well we are finally settled back home. I have been really busy getting our appointments scheduled and getting him back into therapy. He was re-evaluated by his physical, occupational, and speech therapist. All three have noticed a difference in him. PROGRESS!!!! He hasn't even had a full therapy session and already they notice a difference in him. I also took him to his pulmonologist and the first thing he said when he saw him was "wow he seems to be having a good day and seems very alert today". I then reminded him we had hyperbaric therapy and told him Joshua has been like this lately. I can't wait to get him started back into therapy, we are just waiting for all the paper work to go through (because we were gone for so long they had to discharge him and now need to admit him back in). Joshua has really been a little show off lately. Here are the things he has done:

1. first week or two after Hyperbaric treatments we were able to lift his arms and he is no longer as stiff as he was before (we couldn't lift his arms or bend them because of cerebral palsy)

2. more alert and almost as if trying to get in tune with what is going on around him

3. turns his head more...rather than just staying to the right (turns left and right especially when he hears people)

4. caught him tracking Tony across the room (followed him with his eyes--focusing)

5. is moving his legs in the crawling motion (placed him on the floor and used my hands to push himself around the floor--he is still very weak from his upper body)

6. has been trying to suck and actually latched on to my finger a couple of times

7. making more vocal sounds

8.moving his hands and arms (before he only did it when he was having seizures)

9. Seizures have decreased! they are not as violent as before (we would count at least thirty seizures in about 11 hours and now we only see around 6 small seizures!!!!

10. Stays Awake most of the day now! before hyperbaric he would only be awake a couple of hours and sleep most of the day. Now he sleeps through the night and is awake all day and falls asleep around 7pm (he will do this a couple of days straight and then the next couple of days will take naps)

I hope I didn't forget anything else...I am excited to see him doing these things. He is such a determined little boy. OH, yesterday I also moved him to the right which was away from the television and he started to make little noises like he was agitated, so I positioned him back and then he was content. I then moved him again to see if he was upset because I disturbed his tv time(no, he doesn't really get tv time--haha). Sure enough he made little noises again and slowly tried turning to his left (towards the tv)until he faced the tv. Little stinker wanted to watch tv! He looked so cute though because his little face was content and he was so into the television. I LOVE IT!!!

I definitely plan on going back for more hyperbaric treatments as soon as there is a school holiday or vacation time.