Get Well Soon

Joshua is no longer struggling with the flu.....it is now pnemonia. I took him for x-rays on Wednesday. He kept getting really high fever off and on. He is doing a little better now. So far he hasn't had a high fever these last two days. I just pray it clears up soon and before he is scheduled for surgery. If it does not, they will move the date again. Yes, he continues to throw up. These are the holidays right? I need a break......Joshua needs a break. Pray for my sweet baby.

Change of Plans & ER visit

Well they called me and said they can't do the fundo until December 18 because they didn't realize they had over booked and Dr. was going out of town. GREAT! Like we can really wait. My poor baby has to hold on longer. The first thing out of my mouth was "I hope he doesn't end up in the hospital before then". Well, guess what we did! sort of...

Yesterday afternoon he had 103 fever. After I gave him all his treatments, meds, and cooled him off his fever came down. Thank God. So I thought we were in the clear. Then this morning I wake up and he has 104 fever. His breathing was also labored. I took him to the ER and spent practically the whole day there. They then told me he had the flu (was told it is type B: meaning cough and fever). The doctor said that since his breathing had gotten better and seemed pretty stable he could come back home. We just need to keep monitoring him closely because it can become very serious considering all the stuff he's got going on. I am so sad he has the flu. My poor baby. He goes through so much. He looks miserable.

Here is the run down of our week:

Monday-labs/blood work to check levels (meds)

Tuesday-Gastric emptying test (passed----although test was done differently than what his regular feeding routine at home is-- I can't help to wonder is it a true accurate picture of what goes on in his tummy?

Wednesday- pulmonary appointment/GI appointment/Radiology: x rays (YES we were there all day)

Thursday- ER all DAY

*****so I almost think he might have picked something up from the hospital since we have been there so much this week!

Keep it Going

Well it isn't an allergy to the milk. So now they are giving me two options:
1.GJ tube placement 2.redo fundoplication. I am not doing a GJ tube so my only option now is to go back into surgery and redo the fundo. I'm not to crazy about taking him back into surgery. I just feel like now we are backed up into a corner and I really need to do something to help him. He throws up so much! It is hard seeing him go through it. It comes out of his nose and his little face gets really really red. It then affects his breathing and he chokes on it. I hate it. The only other thing I have decided to do is have a Gastric emptying test done before the surgery. I'm a little concerned because at night he seems to throw up at around the same time every night. It also seems like it is a large amount compared to how much he is getting fed at night. I just want to make sure I've covered everything and haven't missed anything. We will do the test on Dec.2 and then on Dec.5 he will go into surgery to redo the fundo. They have told me he will be admitted into the hospital afterwards for a few days because of all his issues. They just want to monitor him. As far as his seizures I've called to try to rush the ketogenic diet. My heart breaks every time I see him have these seizures. He has them all throughout the day!!!! They also seem stronger. It is so hard to see him trying to stand, hold his head, etc.....then the seizures sneak up on him and screw it up. So this Friday after Thanksgiving I will pick up paper work for blood work to check his med levels. They want this done before we start the diet. I feel like a mad woman trying to fit everything in and get everything done quickly.

These last couple of weeks I feel like I am always on the stinking cell phone. I have been calling people left and right. I sometimes want to throw it out the window. I've been calling doctors left and right. I've been scheduling, rescheduling, notifying people about what is being done, med changes....blah blah blah!!!!!!!!!!! It seems like forever for some offices to call back so I turn into one of those pestering parents that calls back until I get things done. So, finally I feel like I've got things moving along again. I haven't had a full emotional melt down yet. I've had plenty of bad days though. Then when I feel like I'm going to let it all out I shake it off and think to myself, I have to keep it going no matter what...for now. I really need to stay focused right now. We have very busy weeks up ahead.

As a matter of fact we are currently in San Antonio. We are here getting him 6 hyperbaric treatments. We left Corpus Christi late Saturday night and got here at about 3am Sunday. Monday thru Wednesday we will have two treatments a day and then go back home for Thanksgiving. I wish we could do more throughout the week. However, I am very happy we could squeeze these in this week. So by the end of the week he will have had a total of 55 hyperbaric treatments. By the way, those of you who worked so hard with the raffles and helped us, this would truly not be possible without you guys. The only reason we are able to do this is because of your caring hearts and the money you raised for this. I thank you so so so much. I will keep you posted.

OH, Happy Thanksgiving & may the Lord's blessings be upon your families!

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.