Crutches

Somebody sure is having fun!

Therapy is Fun

Five years ago I didn't even know pediatric therapy existed. I guess it's just that I never had reason to think about stuff like that and now its part of our daily life. I have been so impressed with the pediatric therapists we have had along this journey. We had an awesome PT while Crew was in Early Intervention and she opened many doors for us and continues to do so. Now, we see Shaun for PT, Darrin for OT, and Trent for Speech. All three of these men are terrific therapists and are able to connect with my child. What a blessing that is!

S loves coming along to the therapy sessions. I'm grateful that my children are exposed to so many different occupations from therapists, doctors, equipment suppliers, drug reps, attorneys, engineers, not to mention the labor intensive hands-on mechanics as well. This lays a great foundation for them in deciding which career path to pursue. Today, I was talking to my brother, who is an attorney, about it and he said, "S, once you figure out what you want to be, get started early so you will still have time to change your mind...." LOL. How true is that! I decided at 20 years old to major in Business Finance and graduated a couple years later. Now, I am 35 and I am wondering what I was thinking at the time. I really didn't know myself well enough to make that decision. Now, if I was to start all over I would pursue a career path in a totally different field, most likely Health care.... but then again- who knows!

I just wanted to include a clip from our therapy session today. This ball swings from the ceiling (genius idea) and we've worked on this before but Crew is making great strides. The ball activity is working his "core" as well as hand-eye coordination and fine motor skills. Hope you enjoy!

• Scroll all the way down to the bottom of the blog and turn off the music before playing the video. I wouldn't want you to miss his little giggle.

A NEW FRIEND

We just met Hope this week. HOPE... you are doing such a great job with your Croc not to mention your little pink canes. Thanks so much for sharing your smile and for waiting patiently for Crewzer to catch up:)


It's quite a world we live in!

I am so blessed.

Appointments Appointments

I've had so much to say this week but no time. I guess that is how the game goes. On Tuesday, we had Crew's 4-year Well Child Check. It almost seems silly to go to the Dr. for that when we are always at the Dr. anyway. Crew weighed in at 27 lbs. He is below 3% for weight and between 5- 20% for height. I'm just glad he's on the chart:)

On Wednesday we made two trips to Logan. When we arrived for our morning PT appointment the PT told us he had Strep. He said he had been on antibiotics for 30 hours but could be contagious for another 6 hours. He let us decide if we wanted to do PT. I decided to play it safe and leave but I could tell Crew really wanted to swing. I ended up staying and swinging with him by myself for 45 minutes. Sheesh, I'm really glad I drove over for that.

Later that night I hauled the kids to Logan again for a party put on by the Therapists. We were able to meet some of the other kids and their families. They had food catered by Panda Express and a carnival for the kids. Crew was really motivated seeing so many kids in their walkers and he buzzed around the place for awhile playing basketball, PLINKO, bowling, fishing and the Cake Walk. The Cake Walk was his favorite. He probably walked around that circle twenty times!

On Thursday we took Crew down to the Childrens Hospital for Botox. He got 8 injections this time. He did really well. Carl came and we discussed the Baclofen Pump with the Dr. again. We will probably go this route eventually. The question is when. I really want to fatten him up a bit before we take that route.

I made the trek to the Childrens Hospital again on Friday. Crew had his 6 month Opthalmology followup. His right eye has been turning in. We have to patch for a couple hours everyday for 2 months and then we will look at having another eye surgery. We patched him when he was just one and didn't have problems but now he is four! How will we ever keep that patch on him? If anybody has any experience or ideas let me know. He cannot be bribed because developmentally he just doesn't "get it".

On Friday night I made the trek back to SLC but this time it was for pleasure. One of the drug reps that comes to our office took the office to dinner at Flemings Steakhouse. Honestly, I'd have to say it was probably the nicest restaurant I've ever been to. I had the Petite Filet Mignon ... so yum! Carl took work off and we'll chalk it up as an early birthday dinner for me.

Today I survived another Blue and Gold Banquet with the Cub Scouts. We put on this skit. The boys laughed their heads off . We also had a couple pinatas which generated some good laughs.

There is so much more to say but I'm ready for this week to be over already.

The Intensive Therapy Program

While we have been home from the Intensive Therapy Program for over a month, I still want to document our time there. I posted previously about the long drive each day and the 4-hour per day therapy program. However, the travel time was the least of my stresses. There is a reason they label it an "Intense" program. I felt like the exercises were pushing Crew in a way he has never been worked before. After about 9 days of inconsolable crying during the Neurosuit part, I became convinced that Crew had torn a muscle or something. It was just to hard too watch and I asked them to stop so I could look at his legs. Every time he was put into a hamstring stretch of any kind he would collapse and start crying. I was biting my nails trying not to freak out and I even told them I was quite disappointed in the program. I knew going into it that it would be hard but we have always tried to make therapy fun and this wasn't fun. I was so worried that it would ruin his perception of "therapy" and I told them that. They gave us the option of bumping the hours per day to 3 hours and I felt like that was a good move.

Before we committed to the program, Carl and I decided that it would be worth it if he even learned one small skill during his stay. Sometimes, something as small as holding a toy or sitting for a few more seconds can be a huge accomplishment. Realistically we hoped that he would pick up something small. We knew the program was not a cure all.

Our days started with a massage and then 2 hours in the Neurosuit (which we later reduced to one hour per day). Half an hour in the stander, another half hour in the monkey cage and a half hour in the spider cage where we worked on various strength training exercises. Crew did quite well in the cages considering and he liked the stander.

From the pictures you can see the pain in his face, the determination, and his sweet temperament... trying to look happy when he's not. Maybe it was harder on me as it is still hard to write about it without getting upset.

So, the big question is was it worth it? I truthfully can say that it was. Crew gained strength most noticeably in his legs. His high kneel is so much better. He learned to stand up from the bench with only a finger for balance and has made progress with his walker. When using his walker he is able to turn sharper and his endurance has improved. So thankfully we did make progress... in more than one skill which is more than we expected.

The next question: Would you do it again? I have to say that I would. The center doesn't take children before they are 3 and so we qualified but I wish they would have said something about the level of development. A typically developing three year old understand when you say for example, "Just 1 one more and then your done". Crew totally did not get this and sometimes we would sit for several minutes waiting for him to do just one more squat, one more leg lift, one more crunch. I really do think that he would have done better if cognitively he was at a higher level. So with that said, "Maybe again next year".

Pediatric Rehab/ Speech

Tonight we met with Trent, our new speech therapist. Right away he started signing with Crew and connecting with him. We discussed my expectations and previous disappointments. I could tell right off that he has a lot of experience and a wide knowledge base. We are for sure going to start seeing him on a regular basis.

I am so relieved!

And... I am tired so that is all:)

Only 376 More Miles

Two more days.... two more days, only two more days!

Today was good! I think we only had tears once during therapy. Lots of whining which is nothing after last Mondays meltdown. Seriously, I've never seen anything like it. Crew insisted we go outside so we took him out to the parking lot in his Neurosuit and walker. Whoa, talk about motivation. He was running around like his old happy self but we were freezing. Literally, it was like 15 degrees so we went back inside and he freaked out. It probably took ten minutes to get him calmed down. Needless to say we learned our lesson... we will be staying indoors for the last two days.

Tressa (our favorite PT) is going with us in the morning. It will be fun to have some company and see what she has to say about it all.

Only two more days:)

Isn't it Friday yet?

We hit the roads at 6am this morning. As soon as I got on the freeway I could see that there was black ice. Cars and trucks were off the road on both sides. Firetrucks, police cars and ambulances lined the roadway. It was dark and hard to see exactly how many slide offs there were but I did see a pickup truck upside down in the median. I debated wether I should turn back and prayed aloud while crying my eyes out. It's kind of embarassing to admit that I was so freaked out but at the time... Fortunately, we are okay. The traffic was horrible as we passed "lake affect" city. It took me an hour longer to get to therapy today. I left really early so we ended up only being a half-hour late.

Crew has been a pill about the eating thing. I tried giving him his meds at therapy (in front of 4 therapists) and he spit them all over the place. Therapy has been extremely hard on him the past couple days. He has never been worked this hard before plus I know he doesn't feel his best. They push him until he collapses and then make him get up and do it again. There has been a lot of crying and I feel real bad. It's a battle I face... not knowing how hard to push. I want to stick it out though. I would hate it if we didn't finish and then all those years in the future wondering "what would have happened" if we had finished it.

I did take Crew to the pediatrician to get a good bill of health. He said he just might have some lingering achiness from the flu, plus he is getting a cold. He thought it would be best to continue with the intensive therapy. At least I know he doesn't have an infection or something.

When we got home today, the boys and I delivered flyers throughout the neighborhood reminding everyone about the "Scouting For Food" drive. Tomorrow night is the Pinewood Derby and I am going to miss it. I am staying in Orem at my uncles so we can save ourselves the commute. The derby really is more of a father/son event and this way Carl will be forced to take off work so he can take care of the boys and go to the derby. Dad and boys are still finishing their cars. I just hope S and H have a finished car by the time it starts. LOL.

Oh, and to top it off my eyelashes are falling out!!! I haven't changed my makeup or anything... anybody know why this could happen? Stress maybe? Dry weather?

Day 1- I CAN BE A SUPERHERO NOW

This is our first time trying the NeuroSuit. The suit frames the patient's body with bungee cords which provide compression. This compression increases awareness of how his body feels and moves. The movement Crew makes is resisted by the bungee cords which will hopefully increase his strength in a shorter period of time.

Watching him walk with the suit on I could see that he really had to work hard to move his legs. It reminded me of those days when we struggled to move pipe through fields of deep clay/mud. Every step took much effort as our feet felt glued to the ground. We were tough little farm kids and without a doubt our lifestyle contributed to that.

Crew works much harder than we did as kids. Every step takes effort as he works those muscles. It's hard to watch him struggle and the staff at "Now I Can" asked how often his older brothers help him. They are so good to pack him around, help him in/out of a chair, and get him what he needs. I haven't really spent a lot of time thinking that we are hurting him in the long run by doing these things for him. Still, its so hard to find the balance between making him "work" and taking care of his needs.

The PT evaluation went well. We've set some goals mostly centered on building strength and endurance and transitions.

Crew is struggling to eat which is an indication that he still is not feeling well. I can't help wondering if the timing of this is all wrong?

Intensive Therapy

The walker and DAFO's are packed and we are ready to embark on our 3 week therapy adventure. Five times a week for three weeks, 20 hours of commuting each week and 20 hours of therapy each week. Crew will get more hours of therapy in the next three weeks than he has in the last year. I have butterfly's in my stomach. It's a huge investment and I'm crossing my fingers that the flu bug will pass by morning.

I'm still worried that we will get there for the evaluation and be turned away for some unknown reason. Keep your fingers crossed for us:)

Balance

Tonight I have a very irritable little boy with an ear infection. I knew S was pitching tonight so I dragged little Crew to the game. Have I mentioned how much he dislikes watching the games. After pulling all my tricks out of the bag we disappeared half-way through the game to go play. Crew has made it very clear to me that he expects to play on the playground with the other kiddos.

Away we went... another chance for some therapy ummm I mean playtime:) Together we climb the ladder, climb the stairs, back down the stairs, hang from the bar, down the slide.... we do it all. Together we do it all! T-O-G-E-T-H-E-R! And while I love this time with Crew watching him work and smile, it's clear to me why I am the only mother on the playground. Yet, I feel torn between spending this time with Crew and watching S play ball. I don't want the older boys to feel cheated because I spend all my time with Crewzer but what's a mom to do. These early years are so critical. I want to see Crew get stronger. I want to see him grow and develop. I want to hear him talk. I want to see him run.

I feel stretched so thin. Today I caught the implication that my dear friend feels hurt that I have not talked to her recently yet I have not had time for anybody other than family. I've never been in the circus and juggling has never been my thing. My life is completely out of balance. I'll admit it! All emotions are on the surface and I struggle to maintain some level of happiness in the home. My friend has been grieving the loss of a child and as the year anniversary of her passing approaches I'm sure she is needing my friendship. I have tried to reach out to her and show her that I care and so it hurts knowing that I have let her down.

I'm currently waiting and praying for the opportunity to be eligible for RESPITE care. Taking care of Crew is a full time job and can be quite taxing at times. Respite would provide the Balance we so desperately need to keep this family together and so we hope and pray for this to become available to us.

Icecream for Breakfast

One word: Motivation.

During Crew's PT appointment yesterday we discussed finding something to motivate Crew. This has been a major topic for us since the beginning of Crew's PT days. What mother wants to hear that their child is lacking motivation.

Wikipedia states, "motivation refers to the initiation, direction, intensity and persistance of behavior. Motivation is a temporal and behavioral state that should not be confused with personality or emotion".

Okay, I feel better now:) It's not his personality that needs changing just behavior. In an effort to motivate Crew to roll I used the best thing I could think of..... ICECREAM. I have just one thing to say, "Icecream does the trick:)"

3 Active Gizmo's

I feel so blessed that Crew is responsive to physical therapy. We started with Shaun once again after our previous therapist moved. This week we talked about goals and decided to work on rolling. As strange as it seems, Crew skipped the whole rolling issue and now its time to go back and learn it. Rolling is a crucial step towards those necessary transitions such as pushing up into a crawling position.

The key to successful therapy isn't just a great therapist but also following through with the homework. That is the hard part for me. I'm trying to get Crew's brothers involved so that the responsibility doesn't fall solely on my shoulders. Yesterday we played a game where Crew lays on his back and rolls from side to side picking up dominoes from his left and placing them in a bowl on his right side. I wish you could see how hard he works. It takes major effort on his part and Crew is an inspiration to us all as we watch him work through it with a smile on his face. He laughs at himself as he struggles to pick up the dominoes. Just watching him work through it with such a positive attitude is really really neat!

H is loving soccer this year! Two years ago he really struggled with the game and its amazing how far he has come. I love watching him play and learn the game. These little kiddos are so cute.

Towards the end of the game I started feeling really bad for the Red team as our team was able to score goal after goal. I feel like these kids are young enough that its just to devastating for them to go home losing 0-8. Everybody should get a turn to score but that's not how it works and as they get older it becomes more and more competitive. Such is life!

S and I ran a 5K on saturday with very little training. I'm not a fan of posting pictures of myself and the sun is extremely bright (thus the squinting) but DS#1 deserves to have some recognition. He is a great runner and I'm thinking that this is the last year I will be able to keep up with him. I got 1st in my age group and S got 2nd! I guess that tells you there weren't many runners there! Ha! Right towards the end I let S go ahead of me to pass a boy about his size and just as S passed him this boy turned and took a shortcut across someones yard, barely jumping in front of S and beating him by 5 seconds. I was behind him and saw the whole thing. I was so mad! Big cheater!

The weather here is great and I'm looking forward to getting some gardening done. Yeah!

Dr. Visits galore

Yesterday we saw the ENT. Crew's tonsillectomy was a success and his tubes look good. I had a nice visit with the Dr. about what this "progressive hearing loss" might mean for our future. I love going to The Lodge for appointments. It's only 1/2 mile away instead of the usual 30-60 minute drive. I took the walker and Crew loved "crewsin" around. When it was time to go home he threw a fit. Then, I drove him down to Walmart so he could practice navigating his walker. Taking the walker out in public is a post for another day.

Today was Opthalmology. We made the trek to the Childrens Hospital. In the waiting room I met a mother and her quadruplets! Whoa, that is so amazing. The quads are 4 years old and look great.

The eye appointment went well and Dr. whats-his-name gave a good report. The eyes are straight. Yeah! I updated him on the hearing loss and asked if he thought Crew was eligible for a deaf/blind intervener. He agreed that it would be to Crew's benefit to get one. He dictated a letter regarding the vision loss which I should receive in a week. I don't know what will come of it but its worth a try;) Thanks Lisa for helping me get tough!

Tomorrow..... Physical Therapy and Audiology for Crewman. Chiropractor for me:)

There's a first time for everything...

At 2 1/2 years Crew weighs in at just over 21 lbs. Now, on the "charts" and according to the doc this is considered "failure to thrive". Okay, I feed the kid... I really do. Because of his CP he has a hard time chewing and swallowing. I am always offering him something to eat but he usually just pushes it away. I have felt that he is getting really bored with the usual... yogurt, fruit, PB&J, Pediasure.

Yesterday morning I couldn't get him to eat much. We had to go into town for private therapy. Crew was extremely grumpy. He wouldn't use the walker and was obsessed with opening and closing the door. Finally, the therapist dug out a bag of Teddy Grahams and put them in front of Crew. We had Crew down on the floor on all fours and would have him reach up to get the cookies out of the bag. Supporting his weight with just one hand on the floor, balancing and reaching up with the other hand to catch a cookie is a great exercise, I learned. Crew snarfed the entire snack size bag of grahams. The therapist and I discussed that it is obvious that Crew is frustrated. He wants to be mobile. He wants to do what other two year olds do but he is so limited. Also, when kids are hungry or tired... the affects are huge. I wanted to go to Sam's after but he was so dang ornery! I decided to bag it! Instead, I stopped at Wendy's on my way home and ordered him some chicken nuggets. Yes, chicken nuggets! I've never given him any before and decided it was time to give it a try. While driving back home through the canyon, I kept handing him nuggets. He mutilated the first 3. I am assuming he ate them because I couldn't find them in the van ( he has a tendency to throw his food). LOL. After we arrived home, I put him in his chair and gave him some more. He looks happy doesn't he? It's time to introduce some new foods! Any ideas? 

Another form of therapy...

This is it! This is what I've been anticipating all summer long! It's finally here.... Therapeutic Horseback riding! Yeah! I really have been looking forward to this all year. The area in which we live is quite rural. There aren't very many opportunities for "extra extra curriculum activities". Don't get me wrong, we have soccer, baseball, football, dance, gymnastics, karate etc, etc. But for these advanced forms of therapy... it's kind of hit and miss. Crew has been fighting sleep for the past 4 days. He wouldn't take his nap. I tried twice and he cried for an hour both times. Then low and behold, an hour before we needed to leave he finally crashed. I had to wake him to go to therapy. He was still a bit groggy when we plopped him on the horse. The helmet they provided was slightly big. It kept flopping forward, shielding his eyes. He cooperatively held onto the horse and they walked, one volunteer leading the horse and one on each side to keep Crew upright. Around and around they went. Each time they passed me I would call out his name. He couldn't hear me. *frown* After the 4th or 5th round he finally hears my voice. He lifts his head, peering under the helmet...searching the faces.. then he spots me. I snap this picture. Crew lays his head down on the horse and sobs. On sob after another. Tears soak the horses mane. He can't stop crying. It was so sad.. yet kinda cute. I was tempted to whip out my camera again and take a picture of him laying down on the horse (for blogging purposes), but instead I pull him off the horse and try to calm him down. Maybe next week will be better. 

Aqua Therapy

Pics of Crew's weekly aqua therapy session with T.










Crew standing against the wall. T is making waves.










Crew walking through the water with his ladder made out of PVC pipe. Also, he has 1/2 lb weights attached to each ankle. Way to go Crew!










Climbing the ladder isn't really what T had planned. Boys will be boys!