Monday, August 30, 2010

McWane Center and other tid bits!!

We have officially entered the LAST week of therapy camp, and I am soooo ready. Dont get me wrong I have so enjoyed seeing James progress so much here, and the Ronald McDonald house has made this long stay away from my family less sad. But I am ready to be back on my own bed, see my husband, my dog, my cat and my very own stuff! I know that James is ready to get back home too. He just isnt himself here. He is still sweet for the most part but boy oh boy does he have a short fuse.

Tonight there were a LOT of people in the dining room ( the dinner was YUMMY) and it was noisy. James just doesnt handle that level of noise very well. He played with the kids for a bit but we had to leave and let him eat in the room because he just couldnt take it anymore. It is hard to see him get so upset and overwhelmed by it all. So I know he will be happy to be back home. Even if it will only be short lived. ( Ill get to that later)

I took James to the McWane center today. The RMH gives the families a pass for the zoo and McWane center. How nice is THAT!! I was concerned that there wouldnt really be much for James to do , but I was suprised that he was able to participate in a lot of activities. He LOVED that there were buttons everywhere and he could push anything. It is a hands on kids science center for those of you that dont know. We had never been and I really want to come back with Josh and spend the day. I will post the pictures I took later.

Tomorrow we will begin our last week here at camp and it is a little bitter sweet. James has progressed SO much that I just cant wait to show everyone how much stronger he is getting. We still have a long road of hard work to go before he is walking independantly but he is on his way! We have amde such great friends here at the RMH. I have enjoyed our dinners together and just getting to know each other. We have heard some very sad things and there have been some families that have lost their children while we were here as well. This house is not a vacation spot but it is safe, beautiful and a home a way from home when you need a home life envoronment the most. I have really enjoyed it here. And when one of the ladies asked me to tell James' story for the RMH newsletter I was more that happy to do so. I will never look at those little donation boxes at McDonald the same. So plan to hear some ways that YOU can help me give back to our home for the last 3 weeks.

Well my little man is sound asleep and I am going to do a little work before I join him. I will let you know how tomorrow goes!!

Saturday, August 28, 2010

Turning 32 at the Ronald McDonald Hose

As a kids McDonald parties were really fun. You got to eat cake and chicken nuggets, sit in a big throne chair and play in the ball pit. WELLLL having an adult birthday at the Ronald McDonald house isn't as much fun come to find out. No ball pit to play in, the "throne" isn't as regal as one would wish for and my chicken nuggets got stolen!!

Yep that pretty much sums it up for today. My Mom, Jenda and the kids come down to see me today. That was GREAT! I needed to see some faces of people I loved around. I have made some great friends here but I am officially homesick. So it was good to have people that love me around. Mom brought me her Pot Roast which I usually request for my birthday dinner. And they brought me a nice big chocolate cake. They didn't get here until a little later in the afternoon so James was a little in the cranky and tired side. Jenda took the kids to her mothers and mom and I got to hang out. James had to lay down for a nap ( so did mom hehehe) . It was nice just to be in the room with her again.

So after they left, James took a good long nap. When he got up I was ready to go downstairs and eat my yummy birthday food. But it was not meant to be. Someone decided that it looked toooooooo yummy and they took it. I had it labeled and it was sitting right beside my bin. But I guess they were SO hungry that they lost all compassion and ate it anyway. SIGH!! Since James had napped so long we missed the house dinner, so I had to walk down to Moe's and get us something to eat.

Did you know that Moe's wont take your credit card if you don't have your ID with you??? I didn't but I do now. I keep my card in my little ID badge they gave us at the house with our room keys so I don't have to carry my purse around. But I don't have my license with it. And Moe's wouldn't let me pay unless I had my ID so I had enough cash to buy James' food but I had to leave my nice big black bean burrito there :-( SIGH again!

Well here I am in my room tonight and I have decided that I am declaring a Birthday DO OVER!! I refuse to turn another year older because this birthday just doesn't count. Yep that is what we will do! HAHA! You think I can just refuse to get older but keep the cake part???

Thursday, August 26, 2010

Camps days #6 and #7

Going to combine since I forgot to post yesterday! oops! Well if you have been following on James facebook page, I am sure you saw the abundance of videos that I posted yesterday. James had a great session on Wednesday. He had an early bedtime and I have discovered that a little Baby Advil is in order for out little man. He is sore and that seems to get him through the soreness. His daddy also surprised us during therapy with a visit!! James and I were very excited. Josh got to see in person James walking in his canes. He loved it!!

After therapy, Josh and James took a nap and I took a little break from having a 2 year old attached to me 24/7. One of the housemates here at the house discovered that I was a photographer for Now I Lay Me Down to Sleep and she asked me to come and take pictures of their son. God has given them the gift of time but sweet little C's time here on this side of heaven is nearing a close and I was happy to be able to offer my services to his family. I ask that you pray for this sweet family, and pray tot he God of miracles that His will be done. We know that he promises healing and I know this family longs for that healing to be on this side of heaven.

But after my session, I went over and sat by myself in the living room . It was nice to just relax a bit. I went and woke up the boys after a few minutes and we all came down and had dinner. Josh got James to eat an entire piece of pizza! And everyone was so shocked that one of the other moms actually took a picture of it LOL! Daddy has the magic touch I guess ;-) It was sad to see Josh leave but I am glad he could come down.

Today was another successful day at camp. James had a few meltdown with frustration but they were eased by the new listening therapy program that we started. It is specialized music that plays at a specific frequency and modulates to match brain wave patterns. It is used for a variety of sensory issues, but the therapist here use it on post rhisotomy kids that are having some sensory issues like James. We think he is getting overwhelmed when the gym gets crowded and loud. But when when we put the special headphones on he calms down. James has always been very musical and this is right up his alley. He isn't a great fan of the headphones but he asks for the music. Or as he calls it "My music" So we are going to use it for the rest of camp time and see what difference it makes. Anything that will help his PT goes smoother I am ALL for.

I did a Mommy no no today!! I asked the therapist what she saw and James' walking chances. YIKES!! This is a no no because without fail the therapist will either tell you they don't have a crystal ball or give you a VERY low ball answer that will crush your spirit. So I have learned to words these questions very carefully. I want an honest answer but I know they they cant see the future either. So I asked what she saw ans James' strengths in his potential to walk. I was shocked at her answer. She told me that she thought James would be walking with his canes ( if we keep up the hard work) in 3- 6 months. I think she expected me to be disappointed but I know there isn't a magic "fix James pill" and this answer was exciting to me!!

St. Louis told us that they saw James being able to use canes by kindergarten and taking independent steps by age 8. And just 9 week he is already in canes and doing really well with them!! I am thrilled with that!! So it has been a great last 2 days of camp. We are also going to go on Monday just so that James sticks with his routine. We think the change was part of the cause for the meltdown Tuesday. So instead of just handing out Monday we will go in and just watch int he stander for a bit.

I think that is it for tonight! I am going to try and get some sleep tonight

Tuesday, August 24, 2010

WHO sucked all the happy from the room??

I don't know who did it, but they need to bring it back right now. James has been just awful this morning. I do not usually use those words to describe my sweet baby boy BUT today I do. He woke up screaming this morning after not going to sleep until almost 11pm, and then he refused to eat. That has been par for the course here at the house. If you have been reading my blog very long you know that eating has always been a struggle for James. He likes to live on the edge of the growth chart to give me something else to worry about ;-)

But today he took an extra dose of unhappy and then proceeded to share the "love" with everyone he came in contact with. Normally people that meet James talk about how he is the SWEETEST child on the planet. Always has a smile on his face and is always laughing. Not today though! We walked over to therapy camp after a few time-outs along the way for hitting. Therapy actually started well. He did great during the heat and massage portion ( I would too) But as soon as he was asked to do any stretches or work it was over. The pt was great with him. She was firm but not overly so. We both tried to distract him and make it as fun as we could but after he reached out and bit the pt I knew nothing was going to work except a nap.

He got a few timeouts and they even tried to change therapist to see if he would respond better. He bit that one too :-( I was SOOOOO mortified! Those of you that know me know that a ill mannered child is probably one of my biggest pet peeves. I have seen what happens to children that are not given limits and the types of adults they turn into. That will NOT be my son. I know he wont be perfect but being polite and well mannered is not a choice in my home. So when times like these come up and I have to put actions to my words it is hard.

I now realize why my mother used to say "This hurts me more than it does you" she wasn't talking about the physical pain but the emotional toll it takes on a parent to want your child to behave and when they don't ,how emotionally it is painful to have to correct them. I "want" to just give in and just let him get what he wants and be happy in that moment, but at what cost to his future. I try to keep that in mind. God has given me and Josh the responsibility of raising not the child James but the man of God Christ wants him to be. And I try to take that seriously.

So even though therapy was pretty much a complete bust, they gave us this cane to practice with this afternoon. I plan on do that after James' nap. Then it will be EARLY bedtime for grouchy pants!!

Sunday, August 22, 2010

Camp day #4 and the Weekend

I have been having issues with Blogger so I have been late in posting up my post about James day #4 but finally Blogger decided to let me post. Here goes!!

Friday we had to take a little 20 min drive to the office of another PT that is apart of James' therapy team for camp. This therapist is the guru for stretching the post rhisotomy kids and I no agree! So does James!! But unlike the screaming matches James and I have over his stretches at home , it was a pleasant experience for James. She started out with putting hot pads on James legs for 20 mins and then will massage oil doing a deep massage and then the stretches. During the stretches James kept sighing. The therapist and I were cracking up :-)

After his massage, James worked on his tall kneel exercises. Then over to the big red ball. We also did some wrist extension exercises. I wish I could explain better what all James does in the 3 1/2 hours but they transition so well from one activity to the next it and so often it is hard to list them all. I just know that James is working HARD!!

So since I have talked a lot about what James is doing in therapy. I wanted to say a little bit about what I am going through here away from my support system. Josh and I have a great support system in my family. Unfortunately we are not close with Josh's side of the family. We are grateful for my family,and the love and support they have given us not matter if the agreed with our choices or not we always know we have a soft place to fall. Being away from that I feel a bit lost. Dont get my wrong I am in a nice and safe place here, but its not home. Doing everything 24/7 myself for James can get lonely and difficult. I dont think I realized just how much Josh and I were a team. I miss that. We did get a visit from Josh this weekend and that was great.

James hasnt been eating if we are downstairs, but as soon as Josh showed up James was his happy self and ate like a pig. It is hard to see the stress that being away from home causes James but I and trying my best to keep my eyes on the years down the road outcome. And the stress we are taking away from that life. It is a balance that I dont always succeed in but I try. Saturday James and I had a fun adventure. The Ronald McDonald house has passes to the zoo and a few other attractions here and we were able to go to the zoo. It was really hot but we had a great time.

James and I rode the train and I let him decide where we went. I figure the little guy doesn't get to decide much in his life he can at least choose what we see at the zoo. We spent most of our time at the kangaroo house and with the birds. I didnt want to see the Big cat because he told me they were scary. So we saw less scary animals :-). He LOVED the birds and took us back there a few times. After some strawberry ice cream and a trip to the gift shop we headed back home for a nap.

Oh and as a little note. We will be here for 3 weeks! I thought this was a 2 week program but when I was looking at the schedule I noticed that we are actually here for 3 weeks. Going to be hard to be away for that long but WOW what progress can James make after 3 weeks!!

Thursday, August 19, 2010

Camp Day #3

James and I almost didn't make it to camp today. James decided to wake up at 3am this morning share a happy "Good Morning" with me. I hear his calling good morning and when open my eyes I see little fingers waving and me from behind the half wall that separates my bed and his crib. It was pretty cute but would have bee cuter had it actually been morning. After about an hour of James serenading me with his raspberries on his arm, he went back to sleep. Needless to say it made for a late start to the morning.

We did make it though and had a great camp. James did LOTS of sit to stand activities today. Normal he has a little table in front of him that he will put his hands down on to help him stand. NOT HERE! He has to put his hands in front of him ( in a prayer position) and stand using just his legs muscles. He did 20 reps of that!! His little legs were noodles after that. He did it though because the pay off was getting to roll cars down and slide and what 2 year old little boy does enjoy that.

After his 3 hours of PT he had 1 hour of OT today. She wanted to do some testing on James but after 3 hours of PT she did really get great cooperation. He just keep putting his head down and saying " I go night night" *Mommy's heart was breaking at this one* But the trooper that James is, he did the whole our and even had a little fun in the process playing with the kitchen toys. Although I was concerned that he kept telling the therapist that he burnt the toast! He must have gotten that from my mother :-) Sorry mom didn't mean to throw you under the bus here!! haha

After camp we got to go have lunch with one of James' facebook "fans" that was in town and had contacted me. I just LOVE meeting the people that have prayed for James for so long. It really is nice to put a face to the comments. James was tired but a flirt! He thought her 11 year old was really cool because she was playing her music for him. It was a nice break from the therapy life we are living right now. So thank you Leslie!

After James' nap this afternoon, I think we are going to take a field trip to Wal-Mart and get some things. James is having muscle soreness from all the extra work so the therapist suggested some warming massage cream. Not really exciting events after therapy but we are doing well . This weekend I hope to have LOTS of pictures ( if blogger will start letting me upload them) because if the weather cooperates I am going to take James to the zoo. YIPPIE!

Wednesday, August 18, 2010

Camp Day #2

Whew!! I think I could just post that one word and it would just about sum up what I think about this intense camp experience. I am learning so much and what James needs to be getting in physical therapy. I hope our home therapist are ready for me to come back because I am being armed with some good stuff ;-)

James' session starts out with warm compresses on his legs and back, then they do a 5 min massage to get his legs warmed up. After that they do a series of stretches but all desquised at games that James actually enjoys. Today we worked a LOT on his tall kneel. This is something that we have done at home but the level of reps and intensity James is being asked to do is unbelievable. I didnt realize that he could be pushed his far and DO IT!!

He had to knee walk in what is call tall kneel. This means that he is up on his knees only and cant sit back on his bottom. He had to do a puzzzle inthis position, but the catch was that each puzzle peice what at the other end of the table and it took him about 10 side steps on his knees to get there. THEN he had to bring the puzzle peice back ( 10 more side steps) and put the peice in its place. Might sound simple but this was hard work for James when he has never even been able to get into tall kneel before the surgery.

We did more big ball excersies as well. James got to take a break after a bout an hour and half. Even on his break he had to stand in the stander but he didnt mind because he got to play with playdoh with one of the UAB pt students. She was cute and James was a flirt!! hahaha At the end of the 3 hour James got to walk out using this quad canes. He did even better than yesterday. The put blues clues stickers on his shoes and the canes to teach him the process. I think my jaw stayed on the flo0r because I just never imagined him in canes just 8 weeks out from the SDR.

After therapy we got a special treat becuase Josh came down to see us. It was SO great to see my husbands sweet face. James was happy to see his Daddy too. We got to hangout and eat dinner together. Tomorrow we are adding a little more work ( I know crazy) for James. We will start his OT part of the camp as well. So that means that he will go 3 hours in PT and then have a lunch break and come back for an hour of OT. That is a reciepe for one tired baby!! I am glad that he went to be tonight at 8:30 without issue because he is going to need his rest!

Tuesday, August 17, 2010

Camp Day 1

James and are in Birmingham for an intensive therapy camp. Today was his first day in therapy. Our focus for these next two weeks will be walking and strengthening. We will also be working on getting James a little more independent in using his walker or canes!! I never really expected him to be using canes right now but as of today those expectations are on my high list!! I say that because today I watched James take his first steps using the quad canes.

Ok first let me back up. We left after I had a doctors appointment that I learned I have a hernia...great! not! I am sure it is from all the lifting and tugging I have to do everyday with James. And it really isn't going to change much until James can get a little more independent in his everyday tasks.. After the appt, we hit the road without a place to stay. The Ronald McDonald House doesn't take reservations and when we left they were full but I just put it to prayer that a room would open up, and about 20 mins before we got there I called and they had just gotten a room for us :-) We got here and I was impressed by house nice it is. So clean and everything is really new looking and perfect for kids. Our room is really clean and nice. They also provide dinner every evening which is a huge money savor. Now the downside for us is that Josh can't be here with us. We haven't been apart this long in over 6 years and it is a little scary to be doing all this without him but it really is an opportunity that we cant miss out on for James.

So back to today's therapy. The center here is much larger than our at home. It is obvious that they get grants through Children's. Our therapist is really nice and very focused which I like. She had a clear plan for not just today but also the 2 weeks we will be here. We started out talking about James pre-op and how the SDR has changed his body.

I sort of sat back and let her work with James. She did really great with him. She made everything into a game but still really challenged his body. I was surprised that she jumped into the hard stuff right of, but I guess that is why we are here! She did some of the stretching we have been working on at home doing and then she did some big ball games. I have pictures and videos but blogger isn't working with me right so you can see them on the facebook page as well.

After about an hour of strengthening activities the PT moved to standing and walking. He got to take a break by standing in a stander and eating a snack. There were a lot of other kids in the gym and several came up to play with James. It was cute. One little boy brought James a car but James really wanted his Blues Clues sticker that he had LOL! After his break the pt brought out the canes. They have bit of a different philosophy than our home therapist. Here they want to get them in canes as soon as possible because they feel walkers don't give the best postures. I can see the pros and cons of each side really.

James did amazing in the quad canes! The therapist even said she didn't expect him to be that stable. She told me that she felt we shouldn't put him back in his walker! SHOCKER! I guess we will see how at the end of these 2 weeks he is doing before we make a big choice like that. But it really makes me excited to think of James being able to walk using canes. That opens up his world so much more!

I guess to wrap everything up, it was a great first day. I didn't expect to have as much to say about it as I did but they hit the ground running and I LOVE IT! I am so excited to see what James is doing after this camp. Maybe we can go up to see Dr. Park using canes ...wishful thinking but it is my heart! James is wore out and currently taking a nap and Mommy's isn't too far behind him! See you tomorrow for Camp day 2

Tuesday, August 3, 2010

We ARE still here!!

What a busy summer this has been. Not only the surgery but my photography business has really kept me on my toes. I am not complaining because it has been needed income for our family with all the extra medical costs. Just wish I could get 5 more mins of sleep ;-)

I have been lacking on keeping up this blog and it isnt because I dont want to, more of just having a minute to sit down and type everything out. James has been growing stronger everyday. He is really wanting to walk everywhere he goes. I have been trying to really let him have that mobility but boy is it hard on my back. I have be advised by therapist not to bend over to help him walk so much but that is coming from a therapist mindset and not from someone that lives with a 2 year old that wants to be walking. I just can look at his face and tell him to crawl when he asks me "Mommy I walk now" So me and my chiropractor might get to be best friends but my son will get to walk!!

We will also be headed down to a special intensive physical therapy program in 2 weeks. I have worked it out to where James will be getting 3 hours of PT 4 days a week with therapist that are very used to kids post rhisotomy. I LOVE all of our home therapist and they are GREAT at what they do, but I dont feel we can get that intense strength building that St. Louis recommend due to such full schedules. All we can get right now is 1 hour sessions, and that is great for day to day but I feel that James need s little boost to get his strength back up.

I aslo really want to bend the ear of the therapist that have 75% of their work load rhisotomy kids. I dont know what is "typical" post op and our home therapist dont really know either since they have never worked with a child this young right after the SDR. So some of the habits or issues we are dealing with concern me and I an not getting very clear answers. I get a lot of things I am doing wrong sometimes but not much encouragement that we are doing things right. It can be frustrating to walk on eggs shells and know that your therapist talk about you when you are gone. But I have to throw MY ego out the window and realize that I am doing what is right for OUR family and lives and it is ok if some people dont like me. Ahhhhh to be a "typical" mom would be nice but that is not our life and that is ok :-)

We have some BIG things happening in our family life right now as well. I will talk more about that when plan are a little more firm ( and no I am not pregnant) We are making some really big grown up decisions about or lives and what we want for the future. We are seeking God's plan and we know that He will guide us in all we do. I am looking forward to seeing what God has in story for us.

So that is where we are today.