Day #4-MN

June 30, 2011

We never have gotten adjusted to the time change –last night at 1:30am as I was writing Trey’s blog I noticed a movement out of my left eye…a mouse ran across the floor and into the kitchen area of our hotel room! Trey and Mike were also awake and heard me voice my concern (ha-ha, a nice way to put that I screamed). Needless to say at 2:30am we were changing rooms…good thing our first appointment wasn’t until 10am today.

The very first thing Trey requested of me when he work up this morning was to please give him the same hairdo that he had yesterday (he must have liked all the compliments) and even asked if we could find some purple hair color (like the Vikings) to go with the “do”…nice! My mom brought up a great point about Trey’s new longer hair style. She said he may want to keep it because it may hide his hearing aids. Trey is very concerned with being cool like his big brother’s and may agree with grandma on this point.

So thrilled to report more good news!!! The prayers were heard and answered because not only did the curvature of Trey’s spine stabilize, it got better!

Measurements of the curvature of Trey’s spine:
6/21/10 - 49 degree curve
6/30/11 - 41 degree curve
An 8 degree decrease in the curvature and an overall change of about 20% all for the better...God is Good! Thank you so much for keeping us in your prayers, for following Trey’s journey and for sharing in the joys of the good times with us.
Dr. Schwender (pediatric orthopedic spine surgeon) said that unless Trey’s spine reached a 70 degree curve or more we would not have to talk surgery. He said that since Trey’s spine has stabilized there is a low likelihood that this issue would have to be addressed until Trey enters his teen years. However, he does want to continue our yearly visits.
Again I asked Dr. Schwender if he believed that the benefits we are realizing with Trey’s spine had anything to do with the physical therapy that we are so religious about attending to. Dr. Schwender said that if it was his child he’d be doing PT like crazy but that he has to be objective and tells us that there are still no findings related to PT and MPS disorders. We all looked at one another with smiles on our faces and I tell the doctor that Trey will prove it!

We arrived at our next appointment a little early which gave Mike and I some time to talk about the blessings we had just witnessed with Trey’s spine. Trey pipes up from the back seat that Mr. Mike had his baby and that he wanted to call him. I dialed his physical therapy office and sure enough, Mr. Mike’s baby was born late, late Monday night. I told Trey to tell them Trey called for Mr. Mike and he hung up. I looked at him in the back seat and with a huge smile he said, “ Yeah, Mr. Mikes baby was born but he is only zero years old”

Dr. Pulgreen (ped. Endrocronologist) was our next appointment. Mike and I wanted to talk about the growth hormone shots that Trey underwent for 16months. Dr. Polgreen had so many charts on Trey for us to look at, told us about all the results from other MPS patients on growth hormone and she too talked to us about what has been discussed in relation to MPS at the LSD (lysosomal storage disorders) convention. We talked about the upcoming ERT and what we had on our mind in regards to introducing IGF into Trey’s system to see if he could achieve growth. We had a very productive conversation and came to the conclusion that we would wait on this new option until after ERT has begun. We all agreed that Trey is only 6 years old and that he has many more years that his growth plates will remain open. With that, Dr. Polgreen expressed to us that there is also an option to extend the amount of time Trey’s growth plates can stay open. Introducing IGF into Trey’s system is exciting and scary to all of us; #1 this has never been given to an MPS patient and #2 IGF bypasses the liver (an organ we believe Trey has issues with) so maybe we will see results…exciting. Either way, we are going to wait but to have this open discussion with all the information,data,charts, risks, benefits, etc. was very informative and necessary for Mike and I to make an educated decision for when and if that time comes. Again, the idea that there may be a chance (no matter how small it may be) for Trey to grow gives me something to hold onto, along with ERT, another option at a better quality of life for Trey.
I think for Trey this was a great appointment as well because he didn’t have to get a shot (blood draw).
I told Dr. Polgreen about our discussion with Dr. Schwender and the PT variable and without hesitation she agreed that physical therapy is good…she said, “do it!” As far as there being no documented results on this issue, Dr. Polgreen advised us to have our therapist write up her findings. How I would love for Trey’s success to be the first recorded and even added to “the books”. This could bring the USA up to date in the field of options to be given for newly diagnosed MPS patients. All other countries recommend pt and from what we’ve read, it is covered by insurance as well . Here in the US, nothing we do for Trey that we have chosen to provide to him is covered by our insurance, from water therapy to physical therapy to massage therapy. I remember sitting in the doctor’s office when Trey was originally diagnosed, remember being told there was nothing that we could do for Trey to help him, feeling entirely helpless. To give parents something to grasp, for them to feel like they can provide help instead of feeling helpless could give them hope. When you give a parent something concrete like these results, they can’t help but to feel encouraged instead of defeated from hearing the words “life threatening” in relation to their child…give me something, anything to hold to, to pray for, to undertake, to take my mind off those life changing words.

After today’s appointments, we headed to Mall of America to see the sharks at the Sea Life Exhibit. Trey really enjoyed the exhibit. We also took him behind the scenes where he got to meet Sharky, tour the fishes kitchen, hospital and view the tanks from above…fun for any child! Oh, and as an added bonus, we found and bought Trey his very own UofM jersey(he'll be wearing that tomorrow for Dr. Whitley).

At dinner Trey decided he was going to be the Karate Kid right there at our table. I looked at him and laughed and he told me not laugh because the karate kid is very serious-he must know something about the art of this ancient Japanese sport that I obviously need to study up on.
When we got back to the hotel room first thing we did was to spray Trey’s hair purple. I just know his brothers are going to think Trey is very cool after they see him looking like this!

Tomorrow we have three more appointments then head up to the lake…I won’t be able to post but will make every effort to post when we return home and I have internet access again. I think Trey, Mike and I will really like the remoteness of the next few days…we actually had 13 appointments/tests in four days and are awfully ready for the holiday with family.

Day #3-MN

June 29, 2011
Today started out with a lot of fun and anticipation. Trey probably asked me 10 times what time it was, he was so excited to take the tour of the Metrodome before our day of doctors and tests started.
The tour was very interesting for Mike and I with all the facts that were given about the teams that have played in the dome along with the detail and video of the September 12, 2010 roof collapse. Trey had a tough time trying to figure out how that huge space of plywood and construction trucks could possibly be the Vikings football field. Ok so… what an old stadium.
It’s hard to imagine anything less than the Uof Phoenix Stadium where the Cardinals play in this day and age. Still, cool to see none the less. Trey was given a keepsake piece of the original dome/ roof and a Minnesota pin. We are very happy our hotel was so close to the field and to be here on a day when the tours were given.
Our first test of the day was a very successful audiology test in which Trey promised to do his best. Trey wanted Mike to go in the testing booth with him and even Mike agreed that Trey was very cooperative and followed all instructions given. Up until today we have yet to get an audiology test that any tech. thought Trey participated in enough to consider “usable” data.
During our first doctor appointment, we were told that Trey had a “mixed hearing” loss in both ears. His inner ear (sensory neural) is where his greatest loss was although he also has conductive (bone) hearing lossl which is why we were told he had a “mixed loss”. Trey is in the mild-moderate range of loss in which the doctor projected 30-50% of what Trey hears is garbled. Dr. Rimell (ped’s otolaryngology) informed us that both of Treys tubes are in place, that the one in his left ear was not functioning correctly but even still, both ears tested in the below average range. After a lot of questioning and giving situational examples to Dr. Rimell, the doctor recommended hearing aids and wrote us a prescription for a set. We were warned that hearing aids are not cheap and can run $1,500 per ear (not pair but ear). He advised us to do a lot of researching and even explained that although Trey really only has to wear them for school, he will most likely want to wear them 24/7. And lastly, Dr. Rimell told us that most children with this amount of loss do not do well in school and are even known to fail a grade. With that, he said to expect Trey to do much,much better in school and to anticipate one happy child when he realizes the benefit of hearing 100% of his surroundings.
Funny side note-Trey asked me to help him style his hair in a faux-hawk today. The funny part is he has gotten so many comments about how cool of a hairdo he has…he is eating this up!
A huge thank you to Auntie Missy and Mr. Brad for picking up the boys’ suitcase this morning. As luck would have it Missy and Brad are in town visiting Brad’s family and are headed to his parent’s cabin up North, 12 miles from Granny’s house. Now Drake and Broc don’t have to live in the one outfit they had with them (although I’m sure they will live in their bathing suits once they get their suitcase anyway). By the way, Uncle Steve and Camryn are still stuck in Phoenix and will never fly standby again on a holiday week…glad I didn’t choose to wait for them to bring the boys’ their clothes.
Echo-As soon as Trey saw that he was getting an Echocardiogram he says, “Is this the jelly?, I like this!” I could have sworn that he said the exact same thing last year. And how adorable is this? As we were listening to the beat of his heart Trey looks at me with the sweetest smile and asks if I hear his heart when all of the sudden the sound stops and Trey immediately looks up to me and says, “Mom, did he stop it?” with a smile I respond with, “No, Trey he just turned off the sound”. Trey and I exchange a look that I wish I could freeze in time…his innocence is so special. And being silly as Trey like to be, he asks if he could have his jelly (the gel they use on your skin when doing echo’s and ultrasounds) cold. The gentleman tells Trey to come back in the winter and he’ll be sure to get him cold jelly.

As my stomach is in complete knots awaiting the results from the Echo and anticipating the EKG, I get a text from my bestest friend saying that she is “holding my hand”…what perfect timing for such loving words.

The EKG is done and Trey requests that I do not take off the conductor sticky pads and will only allow nurse Connie because she has an orange smelling oil that is nicer than mommy using nothing and just ripping them off.

The results are in and Dr. Braunlin (peds cardiologist) gives us lots of good news;
-The function of Trey’s heart is normal
-His ejection fraction is 70% (anything above 50% is normal) and word for word “the best I’ve seen all day”-that includes non- MPS patients
-Lung pressure is normal
-Valves are normal
-No leaking
-No narrowing
Of course after hearing that Trey’s heart valves are “normal” Mike and I both question Dr. Braunlin. Last year in our face to face appointment following the EKG and Echo Dr. Braunlin reported that Trey had an “A+ organ” but when we returned home to read the interpretation of the tests, it said that Trey had mild thickening of his heart valves. I was a mess for a long, long time. Mike and I didn’t have the luxury of asking all the questions that came to mind (standing by ourselves with the letter in hand) as we would have had this news been told to us at our MN appointment. Because I didn’t know or understand exactly what this news meant for Trey, my mind began to think the worse…human nature. So this time you bet we had questions. Dr. Braunlin explained that reading the tests are subjective, that Trey’s readings look really good and that the tech said had he not known that Trey had MPS, he would never, ever know better by the looks of Trey’s heart. She said that once they know the patient has MPS they question, “normal, not normal, normal, not normal.” With that, Dr. Braunlin told us there was no need to schedule yearly appointments with her and that we would see her in two years!
With tears in my eyes, I hug Mike and then Trey and tell him I am so happy and he says he is so happy at me for saying that-doesn’t get better than that!
Dr. Braunlin talks to us about what she had learned about MPS in relation to Enzyme Replacement Therapy (ERT) and even showed us a medical article stating (with pictures) the astonishing benefits. She asked Mike and I if we had an MRI scheduled and said that the doctors are now recommending that an annual MRI be given to MPS patients to check the laxity of the head and neck…mental note to subtract the EKG and Echo and to add the MRI for next year.
Talking about the ERT for MPS IV, Dr. Braunlin asks again how Trey was misdiagnosed. As painful as it is relive, we know how important it is to let all doctors know so that just maybe we can prevent others from going through what Trey went through. Our story rings a bell…Dr. Braunliln says that Trey’s story has made a huge contribution to the protocol of diagnosing MPS disorders. That because of Trey’s misfortune, now when a child is diagnosed with an MPS disorder, the doctors are not to stop at that, they are to test for every MPS disorder to make certain they have the correct one. We leave with the ability to breathe normal…thank God for good news!

We were finished with the tests and appointments and it was still light out (doesn’t get dark until 8pm) so we decided to drive by the new University of Minnesota Golden Gophers Football Stadium. Trey refers to the Uof M as “his team”. He feels a connection to the team seeing the “Uof M” logo for years (after so many visits to his doctors here at the U) and had a huge interest in this field because he has watched it be built each time we visited. We parked in the stadium lot and walked the entire perimeter hoping it would be open or that we could get a good view of the field or even be able to take note of when they gave tours…maybe we’d be lucky enough to be in town and not have a doctor appointment when the tours were given. Mike mentioned that he had wished that we would run into an old man that would see us and Trey and let us in for a peek of the field.
No luck, but we did get a few pictures and as I could only imagine, Trey got to see the field up, top of Mike’s hands (pushing him as high as he could go for the best view).
We walked around the campus and then to our favorite sub place “Big 10” on Campus”. We were told that there was a portion of the football stadium that is always open to the public known as the “Hall of Fame” but that is may close earlier in the day. On our walk back to the car, we decided to see if we could find the “Hall of Fame” and if nothing else take note of the hours of operation…again, no luck. As we were headed back to the car I notice a man with a walkie- talkie and a lot of keys and asked him if he was the security guard and about this “Hall of Fame” area. Mike begins to tell him about Trey’s “connection” to the Uof M and wouldn’t ya know J.B. moved to Minnesota from California for his son’s heart condition and the reputation of the cardiologists at the Uof M. J.B. asked if we would like to tour the field, the coaches’ lounge and the players locker room? Are you kidding??? This is just (well almost) what Mike had wished for… things that only happen in the movies. Now that is a field!!!
And talk about player locker rooms…an amazing recruitment tool indeed…impressive to say the least! To top it off, J.B give’s Trey a Nerf Viking football of which he was tremendously happy to accept.

A long day, a fun day, a day filled with lots to take in but not too much for us to handle. Two days down, two days to go. Tomorrow is another nail biting day with a visit to the spine doctor…please keep Trey in your prayers for a straight spine, a straight spine, a straight spine.

Day #2-MN

Tuesday, June 28, 2011

So tired! The boys went to bed at about 12:30am and woke up 6am...that time change gets ya every time! Needless to say Trey woke up GRUUUUUMPY! As anticipated, Trey feel asleep on the drive over to the hospital, woke up as I put him in his stroller, than down again-zzzzz
Good thing for us, he stayed asleep until we were called back for our visit with the doctor…one hour and fifteen minutes after our scheduled appointment time-ugh! Oh well, Trey woke up in a great mood :o)

10:30am -Our very first appointment was with Dr. Van Heest (orthopaedics-hand and upper extremity specialist). She first looked at Trey’s hands for signs of pain, carpel tunnel and contractures (stiffness), to which he had none.
She did however notice the different lengths of bones in Trey’s wrists and said that this was the norm for Morquio patients. She commented that Trey’s thumb muscles looked good and that he had very good motion in his hands and wrists. She pointed out that Trey had mild deposits (GAG’s) in his flexor tendons and that they didn’t trigger, click or catch…all a good sign thus far. Next, x-rays were ordered of Trey’s forearms, wrists and hands. As soon as the x-rays were displayed back in our examination room, the nurse said, “You’ve got SOME bones, Mr. Trey!” to which Drake responded, “Yeah, Trey is not a noodle!”
Dr. VanHeest pointed out that Trey’s bones were not typical (smooth and rectangular) but more ‘knob shaped’ or irregular. She said we would be looking for arthritic conditions in Trey’s future and suggested we schedule another appointment next year with a Dr. Taniguchi for nerve conduction and fine motor testing. If next year we find that Trey is delayed in fine motor skills we will begin occupational therapy. Next year we will also screen for carpel tunnel. Mike had noticed a young boy using an assistive device that was a type of a walker that both he and I thought looked pretty great to get around with…hummm, maybe something to think about to use in school as opposed to the trike (esp. since Trey may not to ride around school on a trike the older he gets). We also thought that as long as he can walk we would rather Trey use his leg muscles instead of any type of motorized chair or scooter.

2pm - With appointment #1 complete, we are now headed to meet Auntie Sharron and Uncle Cliff. We had a nice lunch and headed our opposite ways; us back to the hospital with Trey for our next appointment and them with Drake and Broc up to Granny’s house on the lake. Only two problems, #1-I forgot to take a picture (ha-ha) and #2 we forgot to give Drake and Broc their suitcase. Hopefully when Uncle Steve and Camryn fly in tomorrow to head up to Granny’s we will be free to meet them at the airport and give them the boys’ suitcase. One great bit of news…Trey did not show any signs of sadness as he has many times leading up to the “exchange”. We drove away and the moment Trey questioned when he would be able to go to Granny’s, Mike changed the subject with reminding him that we are going to tour the Metro Dome tomorrow.…Trey was all smiles.


Waiting for his 4 o’clock appointment, Trey was given his own concert of nursery rhymes-he was so embarrassed.


Height and weight time – according to today’s measurements, nothing much has changed in either; weight: 33.6pounds, height: 36inches

4pm - Our next appointment was with Dr. Walker (pediatric orthopaedic surgeon) to talk about our thoughts on the knee surgery Trey under went just a few weeks ago and also Trey’s hips, and ankles. Dr. Walker thought Trey’s knees looked great, had good motion and was happy to hear that Trey was healing so nicely and was not feeling any soreness, pain or discomfort.
After looking at the x-rays we brought from Dr. White in AZ, Dr. Walker said that from a surgery standpoint, everything looked good. Studying the x-rays in regards to the bones in Treys ankles, knees and hips, Dr. Walker commented about Trey’s bones stating that they were abnormal in texture, that they were broader than normal, wider and larger than most. Mike and I asked lots of questions about the recent knee surgery and were told that although the surgery may alleviate some hip pain it will not change the shape of Trey’s bones and the hip dysplasia he exhibits but that it may change the angle that is present with his ankles. We told Dr. Walker about the PT Trey has been doing and he felt it was very necessary to strengthen his knees and increase his flexibility.

Talking about the hip surgeries:

*Pelvic Osteotomy- this procedure corrects instability in the hip caused by a hip socket that is too shallow (acetabular dysplasia). The surgery description included cutting away bone, bone grafts, pins and screws. It was very graphic and sounded oh so painful.

*Proximal Femoral Osteotomy- this corrects an abnormal angle or twist (excessive femoral anteversion) in the thigh-bone (femur), which causes the knees to rotate inward. Without treatment, bones can move out of position (hip subluxation). And, I thought the above procedure sounded horrid, this one includes cutting the bone to realign and position and then adding metal plates and screws…my heart aches for our baby just thinking about these future surgeries that will consist of both procedures.
Dr. Walker talked to Mike and I about having these procedures done within the next couple years and of course we both are thinking the same thing…maybe medical technology will advance enough within those next few years to make this a lot easier on Trey, surgery wise and rehabilitation wise.


A light dinner and a refreshing bath…I am hoping Trey will be ready for an early bed time as we have a big day tomorrow.

Day #1-MN

Monday, June 27, 2011
Off to a good start! Thank you so much to my sweet, sweet friend Yvette and her wonderful husband David (my fellow SWA employees), for always having everything ready and waiting for us with the sky caps at the airport. Never have we had to wait in the long, long Southwest lines to check our bags! You guys are the best…talk about alleviating the initial stress of traveling.
To add to the good start, we ran into Trey’s t-ball and flag football Coach. Coach Dennis and his son Carter, along with the rest of their family were also at the airport, headed to San Diego (wish we were too).
And who should be going through security at the same time as us??? The CEO of Southwest Airlines himself, Mr. Gary Kelly!
How cute is this picture?! A huge thank you to Deborah, my boss, for assisting us with this rare opportunity.
So sweet…the first thing Trey said when he got out of his seat to look out the airplane window was, “look, Drake and Broc, we are up in the clouds with Laci”.
It was a year ago that we left for Minnesota that Laci (our 11 yr old Golden Retriever) unexpectedly passed away. We are so thankful that my mom is staying at our house to help us take care of Tate (or 13 ½ year old Golden Retriever) while we are gone this year. The love and kisses that the boys gave to Tate before we left this morning were so touching. Broc even left him a note that said, "I Love You Tate!"
An uneventful trip from baggage claim to the car rental to the hotel (just like we like it. We then drive around the area to find something for dinner; pizza for dinner
and as luck would have it, the location of our hotel is around the corner
from The Metro Dome (the Vikings home field) and Target Field (home of the Twins)…we have three very happy boys on our hands.
To end the night, Trey asks to make a phone call to Auntie Sharron and Granny to tell them we are here in MN...he is so excited to let them know he is in Minnesota just like them.

Heading to MN

6/24/11

Our annual trip to Minnesota is just around the corner. Of course Drake and Broc can't get there soon enough. Trey is finally "getting it" this year and has come to the realization that he wont get to go up to his Granny's lake when Drake and Broc do, rather stay with Mom and Dad to go to some doctor appointments (11 to be exact). And Mike and I wish annual trip's to MN didn't exist. Since there is no treatment nor cure for Trey's disorder, we don't expect to hear the great news of how Trey's heart valves aren't as thick as last year or that the curve of his spine is less than it was the year before, or to see Trey miraculously run like a child of his age or grow even two inches. Instead, we digest the reality of this God awful life threatening disorder that is taking over our child's childhood with every punch to the gut it throws and know that to be educated about what is taking place within Trey's body is the right thing to do. So again we reluctantly head North to the specialists who seem to know so much about MPS and again we take notes and religiously pray for the best.
We will be sure to post all the results from all the appointments and of course the fun times the boys have up at the lake as well.
Please keep keeping Trey and our family in your thoughts and prayers, they are what keep me goin'.
God Bless~C

Water Time!

6/22/11

We are so happy to report that Trey is walking upright, with a straight back and got the go-ahead from Dr. White to get wet! Although I noticed that Trey is babying his left knee a bit, Dr. White told me not to worry and that as Trey looses his fear of pain caused by the surgery he will eventually walk with weight on both legs just as before.
He also reminded me that it has only been two weeks since Trey's surgery. As Trey was getting prepped for the x-rays he chuckled at what he called the "peter guard" they taped over his private parts. I got a kick out of what the guard said-"Save the Gonads". Drake and Broc also cracked up when they saw the guard in the x-ray shaped as a heart over Trey's private parts. Me and my boys...so silly today!
The x-rays looked good and Trey's incisions are healing well. We will make another appointment to see Dr. White in 6 months.

Great news Treybo, our HERO!

Happy Father's Day

We were so lucky to be up North this weekend for Fathers Day for many reasons; it was very hot in the valley, we got to spend time with Uncle Jeff, Auntie Stephanie, Emma,Papa and Grandma Joyce too along with a lot of badly needed R&R after enduring a hellacious week. Drake had minor surgery done on his foot, and completed the root canal on the from tooth he broke during baseball practice, Broc got stung by a scorpion and Trey's recovering from his bi-lateral knee surgery made for a stressful week. Lots of doctor appointments and worrying about all three boys at once made the cabin life extremely rewarding.

With no TV in the cabin we are lucky to be forced to spend quality time with one another. Broc made a homemade "Deal or No Deal" game for Mike that we all loved playing. Trey especially loved being the banker and was a ruthless one at that. The kids loved playing outside, up in the loft, and just the beauty of one on one time with one another. Trey also took to being the big cousin to Emma and kept a close eye on her...he said, "she gets in trouble a lot huh Mom?" So funny to see Trey not as the baby anymore and how much he loves his new role.

Each of the boys made Mike a coffee cup especially designed by them for him. All three of the cups were decorated with sports teams, and they all gave Mike the official title of "Coach". I am so proud of Mike and how much time he spends with the boys in their individual sports endeavors and obviously they love it just as much in return.
Happy Father's Day honey, Jeff and Papa~thank you for the precious family time!

5 steps=Pizza

6/16/11

As promised we headed for pizza today. All three of the boys were very happy to do so...of course! Drake and Broc helped push Trey around the game area in his stroller so that he could play and reach the games. We were so happy to have Auntie Missy, Ayden and Taryn join us. Of course Missy and I spent a pretty penny for the kids to earn enough tickets to buy cheap toys that they absolutely had to have, ha-ha!

Our next goal comes next week, which is to get the "green light" from Dr. White to get in the water. Hopefully we can keep the sutures clean and dry, the x-rays will look good and Trey will be 100% on his way to recovery.

What a Week!!!

It’s been a week since we’ve been home from the hospital following Trey’s knee surgery and boy o’ boy has he been busy! Trey has worked so hard at physical therapy since he’s been home. He’s gone twice last week and will fit in three sessions this week.
Mrs. Stacy expressed to me on Friday that Trey shouldn’t be carried around by me everywhere we go but instead he should attempt to scoot himself around on his bottom. I was also told not to sit him on our couches because he’s not sitting up straight and that she noticed that Trey’s core was much weaker because of it.
Over the weekend Boot Camp 101 began! I had to give Trey a lesson in tough love and really push him to try things on his own so that he didn’t regress from all the progress he made in physical therapy last week. Trey was one tough cookie and really stepped up to the plate! He went from walking with being almost totally supported by me to holding on with only one hand, walking from chair to chair to today walking ALL BY HIMSELF!!! Also today, at physical therapy Trey was working on building his strength; he walked up steps, stood from a sitting position, threw the ball and even pushed Mr. Mike around the gym on the rolling chair…that was so funny to watch!

Yesterday Trey also began his summer tutoring lessons with Mrs. George. Trey loved it so much he begged me to call Mrs. George at 10pm last night to make another appointment with her today…needless to say, that didn’t happen. I am so pleased to know he is excited to read with Mrs. George and am encouraged by her feedback after only a one hour lesson. I’m sure tomorrow will go just as well.

Mike and I are so happy with the decision we made to have Trey’s knee surgery earlier rather than later. If Trey keeps progressing at the rate he is, he will start the 1st grade with no signs of ever having bi-lateral knee surgery just 6 weeks prior!
Next week we have an appointment to see Dr. White for our two week follow-up but first things first, we are headed to Peter Piper Pizza tomorrow as promised…Trey is one deserving little man!

OH MY GOSH...so in Trey's world I must have taken too long to write this entry because he became impatient waiting for me to see the coloring book he made me as I sat at the computer and unbeknown to me, got up from his chair with the coloring book in hand and walked all the way over to me to show me his work...Hooray Treybo, Mommy is SOOOOOOO PROUD OF YOU!

Another Day

I should have titled this blog entry, "Another Bad Day with Mom". Trey was not about to cooperate with me when it came to moving him, bathing him or doing physical therapy with him. He screamed at the top of his lungs when I did all three. Once again I called and made a PT appointment to try to "straighten" him out...literally. And again Trey was a strong little boy who followed all instructions, didn't shed a tear and even walked with assistance across the table. I was extremely proud of Trey and his determination as he took each step towards the end of the table, smiling from ear to ear, simultaneously he looked at me for affirmation as I motioned him on with thumbs up, a victory clench and motioning exaggerated claps.
We both were so proud of his accomplishment today. We have three appointments scheduled for next week.
On the drive home I asked Trey why he won't try to move his legs with me and he says without hesitation, "you're not a leg teacher, you're not Mrs. Stacy".
Just like he did yesterday, he wanted to trick Grandma Mikki again today when we arrived home to tell her that he did nothing at PT. Of course my mom goes along with his tease and within moments he yells, "No, just kidding". Trey is such a little ham! We are so pleased with his progress.

A Good Day Afterall!

Thursday, June 09, 2011
So the beginning of today day was a much different day for us. Trey has decided that he can’t move. He acts like he is stuck in the seated position and wines when he is touched…anywhere! I keep telling him he didn’t have surgery everywhere, only his knees but he is still afraid to move. I tried to bribe him with a trip to Peter Piper Pizza at a later date if he would try to stand up but with no success. Drake and Broc heard my proposition and instantly started trying to talk Trey into standing so they too could go for pizza.
Soon I hear Trey crying and turn around to see Drake and Broc taking a hold of Trey under his arms in an attempt to get him to stand. Ok, so that backfired! I had to change my requirements to asking Trey to walk 5 steps before going for pizza…no such luck!
I remembered that Trey had PT today and was worried that with his screaming and crying that he may disrupt the office so I decided to call Mrs. Stacy to warn her about Trey’s mood and lack of willingness to attempt walking or even laying down flat on his back for that matter. Mrs. Stacy said if Dr. White said it was ok for Trey to attend PT today then I should bring him in.
I was so happy to hear that she was willing to take a stab at any type of PT with Trey today because I was worried that he may become stiff if he stayed in the seated position for too long. Plus I figured that he would try much more for Mrs. Stacy and Mr. Mike than for “mom”! I was right, Trey was a ‘Pro’ in PT today and not only did he lay on his back, he also kicked his legs out, stood while being held (put pressure on both legs) and even let go of Mr. Mike’s hands and stood unsupported for a few moments! What started out to be a bummer of a day for progress, ended up being an exceptional day…Thank you Spectrum Spine and Sport!
Trey has had lots of visitors over the past two days. He loved seeing his best-est buddies, Gabe and Kian and was very excited to see his cousins this evening but after such a strenuous workout, he fell fast asleep minutes before they arrived.
It was so adorable how they all handmade “get well”’ cards for Trey and positioned them around Trey as he slept so that when he woke up he would know they were there and cared about his well being. The kids were so happy to see Trey wake up just before they were about to leave, each one of them sat beside him and read their cards and words of love. Trey was still feeling the side effects of his pain medication and never really did engage them. After the pain med’s wore off, I re-read the cards to Trey and got big, big smiles out of him as their loving sentiments warmed his heart and soul.
Blessed is Trey to have such adoring cousins, friends and family…he is oh, so treasured! Out heartfelt thanks go out to all who have left messages, texts, email (my facebook page is "on fire"), etc. I pass on the love by reading them all to Trey.
Today was a good, good day after all!