Playing the Drums!

Yes Joey was playing the drums. He was lifting his arm and banging on the drum.

I noticed after our trip to China, his cognition improved greatly. Well I know that it has been only a couple weeks since Costa Rica, but his cognition has improved even more. He is not just understanding what we say and what is going on, but he is following directions now. I never thought he would have the ability to follow directions. I also didn't think that the neuro connection in his brain worked with his arms and hands very well.

Well today he showed me. Yes, he showed me. Before Costa Rica and China, if you grabbed his arm or hand he would pull away (reflexive reaction). He didn't like when people touched his arms. He also would not hold anything in his hand unless you shook his hands and stimulated his arms. Lately he has been more tolerable.

Today during PT, his therapist walked him up to the drum set in his gait trainer. She put a drum stick in his hand, and What did he do? He held it. We then asked him to lift his arm and hit the drum. After about 5 sec. he would start to grunt and look like we was concentrating really hard. Then he would lift his arm up and hit the drum. He did this about a dozen times before the session was over.

When we got home, he did the same with reaching and touching during his Behavioral session. He would start grunting and then would reach and touch.

WOW! I am so impressed with his progress. He is a smart boy and working hard. You Go Joe!

My Son SUCKS!

Changes are beginning to happen.

Today at therapy I was talking with a couple other moms and our OT about vital stim. Even though Joey can eat anything and everything I am going to try a few sessions of the vital stim. I was teasing with the OT and said 'Hey, can you make Joey suck'. I really wanted him to start sucking out of a sippy cup and straw. Within that minute I decided to get up and get a sippy cup to see if Joey can do it yet. Usually he just bites down with his teeth to get the water out. To my surprise he began sucking. He didn't use his teeth at all and kept his lips closed around the cup 95% of the time he was drinking. Tears began to come down my eyes as I turned to the OT and said 'Well guess I don't need you anymore". Hee hee hee Throughout the rest of the day I gave him his sippy cup and he continued to suck on it.

I also got a straw sippy cup. He can't suck that yet, however, when we were in Costa Rica he was able to suck out of a straw on a juice box. So I am going to buy a million juice cups so he can practice. Thanks Gracie for showing Joey how to do it.

So now I can officially say that the stem cells from Costa Rica are working. He is doing so great. First the sitting, then the walking and now the sucking.

Yeah my kid SUCKS!

More good news, I have been trying for a year to get my insurance company to pay for Joey's gait trainer (walker). They finally got back to me and they are going to pay about 80%. Whoo Hoo. Now I only have to come up with $1100. Yes, gait trainers are very expensive. I'm so excited, I am a step closer to getting Joey to walk up and down the street.

Thanks for all your prayers and thoughts. Please keep them coming. We can never get to many.

What Do We See...........................

When are you going to see results?.....................That is the question everyone is asking us since we have been home from Costa Rica. My answer is 'I don't know'.

When we were in China, I saw changes 2 days after Joey's first injection. His eyesight improved right away. Then we consistently saw new changes for up to 6 months after we returned from China. Then after those 6 months he took what he gained and built on that. His sitting went from an average of 3 sec. to an average of 1.5 minutes. His response time improved greatly.

We have now been home from Costa Rica for 5 days. And yes I have seen changes already, however I don't know if I can contribute that to stem cells just yet. When we were in Costa Rica Joey received ABM therapy. He got 1 hr a day for 5 days.

As for the changes I see:

-He is sitting up and forward a lot now in his wheelchair and feeding chair. He did this before, but not to the extent he is doing know.

-He is also sitting for an average of 4 minutes, over these last 5 days. He sat for 10 minutes today.

-His response time in everything increased dramatically.

-He is making different sounds with his mouth. Moving his tongue differently. He is really trying to say a lot of words now. It is still sounding like retard talk, but he is trying really hard and he has increased his vocabulary by tons. It is really awesome to hear.

-He is also starting to suck through a straw on a juice box only. Not mastered yet, but he didn't do this before Costa Rica. I'm sure he will master this soon enough.

-He is walking in his gait trainer much better and faster. Because he has regained much of his eyesight, he sees where he wants to go now. So he has some motivation to move faster.

-He will let you touch and hold his hands and arms now. He used to pull his arms away when someone would try and hold his arms. He loves it when you hold his hand and walk him in his wheelchair.

So to reiterate, I don't know how much of this is actually from the stem cells from Costa Rica, or from China or just from his ABM therapy in Costa Rica. BUT, no matter where it is from, I'll take it.

I am so proud of him. He is really working hard. He is a really great sport.

Headed Home.

WHOO HOO we are HOME!

Yesterday we started our travel home. It was a bitter sweet kind of day. So glad to get home but sad to say goodbye to our friends.

We left the hotel this morning at 7am. What a sight to see. 6 suit cases, 3 wheel chairs, 2 car seats, backpacks, purses, 3 kids, 4 adults, 1 van. I should have taken a picture of that one!

We got right in to pay our taxes so that we could leave the country... yes... airport tax...you don't pay....you don't leave! When we got up to the counter to check in the attendant was looking a bit frazzled. They had our plane load from the tarmac... no jet bridge. She was trying to arrange a bus to get us to the plane. As she checked us all in she jabbered on the phone with ... well ...who know trying to figure it all out. In the end they where able to change the gate and get a jet bridge.... all for us! WOW!!

We loaded the plane early as they were trying to push us off the gate and the bridge to make room for another plane. It was raining but that didn't slow us down at all. Joey was very fussy the first 2 hours of the flight. I almost put a parachute on him and throw him off the plane. He finally ate breakfast and slept for the last hour

We arrived in Dallas almost and hour early. This gave us a 4 hour layover. We grabbed a bite to eat with Makenzie and Pam, then said our goodbyes and sat around waiting. Out flight left 30 minutes late, but still got us home on time.

Our second leg was about the same flying time. Joey did a repeat of the first flight. When we got off the plane, Daddy and Jack were waiting to greet us. It felt so nice to be in my husbands arms again. Joey had a HUGE smile on his face the whole ride home.

When we got home I went straight to bed while Joey and Daddy spent time together. Joey wasn't as tired as I was due to the 2 naps he took.

I want to say a HUGE THANK YOU for all of the thoughts and prayers! This trip was amazing and will not soon be forgotten! Please keep praying for the new stem cells to bring much healing to Makenzie, Joey, Brock, and Gracie!

(Thanks Pam for the post.)

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Last Day in Costa Rica

Today was our last day in Costa Rica. We woke and ate our typical breakfast of scrambled eggs, pineapple, and some kind of potato's.

Then at 10:30 we had our finally appt. at the ICM clinic for his 4th and last Stem Cell injection. Joey's IV was placed in his foot, because that was the biggest vein. So they had to put a cast over part of his foot and leg to prevent Joey from kicking and slamming his foot down on the IV catheter. After the finally injection they began trying to remove the cast. Finally they decided that they couldn't do it, so off to the hospital emergency room to remove it. Boy, are the hospitals here different. The ICM doctor meet us in the front and we walked right into the back. No filling out paperwork or anything. His cast was off and his IV out and badged in 10 min.

Then back to the hotel. Once we got back we ventured to Burger King for lunch. After lunch Joey had his last session of ABM. For dinner the 3 families remaining and the ABM practitioner headed to Rosti Pollos for dinner. Our farewell dinner. Yeah time to go home.

We leave around 7 in the morning to go to the airport. I fly from Costa Rica to Dallas with 2 other families, then from Dallas to LAX. I get home just intime for bed. WHOO HOO!

Thanks to my friends, Pam and Makenzie, Jennifer, Scott and Gracie, and LIsa, AL and Brock this was a fun trip. I will miss you all so much, but remember we will always have .....................but we have F'N Walmart.......with a Deli.......on the Eastside! (inside joke).

Now we pray the stem cells to some work.

A slide show will be coming soon.

5th Day in Costa Rica

Today was a great day. Joey finally calmed down. I figured after he went to the bathroom 4x yesterday that today would be better =)

Today was much the same as yesterday, ABM, lunch, stem cells, hanging by the pool.

The food sucks here. We have gone to Subway (yuck) and Burger King (Yuck) and Rosti Pollo (a chicken place, not to bad), but it just doesn't taste the same. Service takes forever. My diet went out the window. I'm sure I have gained almost all my weight back. It is hard to eat heathy here. So I will just start the diet over again when I get home.

Our hang out place.

Hanging out.

Goofing around.

I have seen great changes in Joey from the 3 sessions of ABM already. He sits forward all the time now. His head control is so much better.

Working with Tanya (ABM Practitioner)

Waiting for stem cells. Sitting up great.

We probably won't see changes from the stem cells for a few weeks at least. Pray we see changes.

I can't wait to come home. I miss my bed and my dogs and kids and hubby.

Today Joey has his 3rd injection of go-go juice.

Thanks to all for your continued thoughts and prayers.

Go-Go Juice - Day 4 in Costa Rica

Today Joey was scheduled for his first injection of go-go juice (stem cells).

Joey had a rough night last night. He didn't sleep well, which means I didn't sleep well. He then continued to be fussy all day.

At 9am he started with his ABM session which lasted an hour. I have already seen changes in Joey with just the 2 sessions he has had. Joey's body is normally in extension (meaning every inch is extended). Since the 2 ABM sessions, Joey is bringing himself into flexion more. For Joey this is a great thing.

Joey, Brock's Daddy Al and I ventured to the market when Joey was done with his session. It is about 1/4 mile away. The markets here are just the same as the ones in the states. Then back to the hotel to gather the rest of the gang and off to lunch at Rosti Pollo. After lunch we headed to the ICM cl

inic for his 1st injection of go-go juice. First it was Makenzies turn, then Brock and then Joey. Joey moved so much, we had to lay him down on the table and I had to lay across his body to hold him still. He continued to be fussy the rest of the day. I changed 4 poopy diapers and he finally calmed down around 6p. We hung outside with our friends until bedtime.

Joey, Makenzie and Brock parked in Handicap parking.

Tomorrow will be the same schedule as today, but hopefully not with a fussy kid.

Time for be, I am exhausted.

3rd Day...Hospital Day...Costa Rica

Today was our 3rd day in Costa Rica. Joey slept great last night. We got up early to get ready. We had a lot to do this day. At 8:30a he started his first of 5 ABM sessions. It took him about 30 min. to get use to it and then he calmed. He did great. Then off to the ICM clinic for our meeting with the doctors and of course to give them the MONEY. The doctor answered all my questions, of course I didn't have many since this is our second time doing stem cells.

We then hung out by the pool with Pam and Makenzie and our new friends Lisa, Al, and Brock.

Then off to the hospital at 11:30a to get the catheter put in for the Stem Cells. Poor Joey, he wasn't allowed to eat after breakfast because he is going to be sedated for the insertion of the catheter. By 1:00p all our friends were at the hospital waiting their turn. Finally at 2:30p Joey was taken back for his turn. The procedure including being sedated only took about 30 min. When he woke up from the sedation, he woke up screaming. He screamed for approx. 30-40 minutes. Boy does he have some lungs on him. The doctors put a partial cast on his leg where the port is so that he won't pull it out.

The day finally ended around 7:30p for him. He was exhausted.

Tomorrow Joey will have his first stem cell injection.

2nd in Costa Rica

Today is Sunday in Costa Rica. We started off the day welcoming the ABM practioner, she came in really early this morning. After breakfast and some goofing around we decided to go have some lunch and site see. We went to the butterfly garden. It is a beautiful place.

We all had a great time together. Then back to the hotel for a little relaxation. Ok, so maybe not much relaxation. Joey again today was very fussy. Whether I held him or not he was fussy. My back is starting to ache real bad. After dinner he finally calmed down a bit. Our friends came to hang out in our room and we starting goofing around some more.

Tomorrow (or today depending on when you are reading this) Joey has his evaluation at the ICM clinic in the morning, then his ABM session, then off to the hospital for this catheter insertion for the Stem Cells. I am getting very excited know JOey is going to get more stem cells.

Please pray Joey will calm down and not be so fussy anymore.

P.S again I have posted more pics and video on www.dropshots.com/fightingjoey

1st Day in Costa Rica

Today was our first full day in Costa Rica. Joey slept crappy during the night (I knew he would, we are in a strange place for him). We took our time and got up and dressed. Joey and I hit the continental breakfast, runny eggs, I love um.

Then around noon we went with our friends, Pam and Makenzie, Jennifer, Scott and Gracie, to subway for lunch then arcoss the street to the park. We had a great time at the park.

We then spent the rest of the afternoon in Gracie's room discussing, Farkle and Bejeweled and our kids funny habits and strollers and wheelchairs. Joey was a wreck by this time. He was

so fussy. He finally fell asleep listening to me playing bejeweled (he loves the noise the game makes), as Scott and I discussed stem cells, waiting for Pam and Jennifer to get back from the market. I thought the nap would help, but not so much.

We then got ready and went to an adjacent hotel for dinner. Joey was not a happy camper, however he did eat a ton. Then the challenges of changing a childs diaper who is too big for a changing table in a bathroom with no counter. WOW, that was a fun experience.

Then back to the room. Joey finally was calm and is almost ready to go to sleep.

I have taken tons of pictures and I am unable to post them all on thi blog, so if you want to see more pic, go to www.dropshots.com/fightingjoey

Stolen Posts

So many times I read other peoples blogs and steal some of their posting. Here is one I stole.

Disability Beatitudes".

Blessed are you who take time to listen to defective speech, or you help us to know that if we persevere, we can be understood.

Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.

Blessed are you that never bids you "hurry up" and more bless are you that do not snatch our tasks from our hands to do them for us, for often we need time rather than help.

Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.

Blessed are you who ask for our help, for our greatest need is to be needed.

Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but is the God-given self that no infirmity can confine..

Blessed are those who pick thing up without being asked.

Blessed are those who understand that sometimes I am weak and not just lazy.

Blessed are those who forget my disability of the body and see the shape of my soul.

Blessed are those who see me as a whole person, unique and complete, and not as a "half" and one of God's mistakes.

Blessed are those who love me just as I am without wondering what I might have been like.

Blessed are my friends on whom I depend, for they are the substance and joy of my life!!!

Costa Rica........We made it!

Gracie eating her Brownie

Pam stretching Makenzie

Joey sitting like a big boy with the airplane tether.

Well we finally made it. We left LA at 915 yesterday and had a 3 hr flight to Dallas, 3 hr layover, then 3.5 hr flight to Costa Rica. We meet up with Makenzie and Gacie in Dallas. Joey did fantastic on both flights, however as soon as we got to Costa Rica, he had a break down. He screamed for about 1.5 hrs. We got to the Hotel, checked in and went to bed. Joey doesn't do goos sleeping other places. Its morning now and only after 6 hrs of sleep we are awake. That is just not enough for me. We now have a couple days to rest.

On Monday Joey has his first appt. at 10am for a check up and then another at 2p for the insertion of his iv catheter.

WOW! I can't believe we are here for more Stem Cells. I am very excited.

Thank you to all for your thoughts and prayers.

2 More Days till Costa Rica.

2 more days until we head to Costa Rica.

I am starting to get a little excited. I just have a lot of home planning to do before we leave. Jeremy will be home with the kids and with the help of my family everyone will get to were they have to be. I will probably start packing Thursday night. Hee hee hee Go figure!

I am going to Costa Rica with 3 other families. I am meeting 2 of the families, Makenzie and Gracie, in Dallas for our layover to Costa Rica. We will be sharing a hotel room with Makenzie and her mom. Brock will be joining us on Sunday. I am very excited to spend time with all this great kids and parents. It is a very special world we live in together.

We will also have the chance to try ABM (Anat Baniel Method), a type of therapy, when we are in Costa Rica. An ABM practitioner will be joining us in Costa Rica to work with all 4 kids. I am very excited to see how Joey responds to this. I would like to continue the ABM when we return home.

We will only be in Costa Rica for 1 week, unlike the 4 weeks we were in China. The protocol in Costa Rica is different then China's, so I am also interested to see how Joey responds.

I would like to extend a HUGE thank you to my dad and stepmom and my sister and brother-in-law for there generous donations in helping us get to Costa Rica. Unfortunately I did not raise all the monies needed, but we have found ways to move our monies around to help Joey get his stem cell treatment.

Thank You to everyone for your support and constant thoughts and prayers.

Spring Break!

The holiday's and spring break are here again. Softball and baseball are on hold until after spring break. Jessica and Joey are doing great. Passover and Easter have been great. We celebrated Passover with a special service at temple on Friday night. Jack's 4th grade religious school class ran the services. Jack made his own Talus. It was a nice night. Then on Sunday we had a family gathering for Easter with my husband side of the family. Boy have I eaten WAY to much. Back to the gym on Monday.

All kids are out of school this week, however Joey still has therapy to go to. On Friday we leave for Costa Rica. Guess I better start getting our stuff together. I am very excited, but just a little stressed with trying to get organized. I am very excited to see our friends and get a chance to hang out with them for the week. I'm aslo excited about the ABM sessions we will be receiving when we are there.

Joey has been doing good these last few weeks. No major improvements or changes lately, however he is a very happy man. I am hoping these stem cells will give him another little boost. In May Joey will receive botox injections in his calfs and then will be serial cast to help stretch his muscles and tendons so that we can get his AFO's on his feet without him being in pain. He will then stat an intensive session of therapy soon after that in May.

Happy Holidays' to all. Blessings.