2nd Follow Up Appt.

Follow up appt. Dr. Standard at 10am then Land therapy with Michelle, then pool with Marlo. It's been a rough week. Tightening is happening quite a bit now. Have to force ankles to be able to get them to neutral position, and work on knees to keep them flat, although knee bending is still good at 90º. Exrays show 4.25 cm on femur and 3.75 cm on tibias, but the tibias are going into valgus position - (bowing). So, that means that about 2 weeks before leaving we have to change apparatus on shins to make corrections. Dr. S noted that bone growth is still really good and advised to slow to 4 turns on femurs and 3 on tibias which may help soft tissue 'catch up' a little. Also advised he can do standing transfer which may also help ankles and prep Matt for standing exray as we get nearer date to leave. Dr. S believes he should be able to continue lengthening with no problem and to follow up in 2 more weeks - have appt. booked with Dr. P already for that. So, by next appt. we shld be around 9.7 cm/ just under 4". As initial goal at onset of surgeries was to gain 12", Matthew has decided that he will continue lengthening until he is told he has to stop - but will not do a muscle release to go further. As of today's measurements, in total, he has already met that initial goal. With basically 6 more weeks left of potential lengthening, anything he gains now is a bonus!

Went to the new pool today!

Had new foot plates made today - old ones were too short and were creating nerve trouble in foot. We then went to therapy which went well, then we immediately loaded up and went to the pool. - It was great. There were only 8 people in the entire pool, it was nice and warm, and Matthew and Marlo finally got some weight bearing /exercise, although we may find that we've over-done the first day. We plan to go M-F right after therapy each day. So glad we found it!

We Got Pool!

Therapy went well today - had a shower this am and it always seems to make Matthew feel better - He is really looking forward to getting to the pool, so I sure hope it works out. Anil (head of therapy at Sinai) advised chlorine level needed, so as long as we are in the ball park, we are going to go to this new pool. - Well, we're going in! - the Wellness Center called this afternoon and advised that they keep their chlorine level at 3, which meets the specs at Sinai. We'll sign up tomorrow and let you know how it goes. Take care.

Think we have a pool!

Had exrays done to check that Matt's femurs are ok at the turning schedule we are doing - and were told all looks good. So we'll continue the same until his next full follow up on the 27th. Got a prescrip. for Baclofen - a muscle relaxer - that will hopefully make life easier. Went to view a pool that is nearby to see if they will accept fixator patients as we are told it will be at least another 2 months before Sinai gets their's fixed! Turns out it is only 20 mins away, The director used to work at Sinai for 23 yrs., has a soft spot for all that they do and is willing to let us use the pool. He is calling tomorrow with their chlorine levels, and if all looks good, several families here at the house will be using their pool for the next little while. We are all very happy! It will make the kids recuperation much easier, and 3 months will cost the equivalent to one aqua therapy at Sinai!We couldn't have found it at a more needed time for Matthew as his joints are getting so tight. Ttyl! take care.

Still doing well, for the most partl.

We went down to the Inner Harbour with Marlo and family on the wknd. We had an early dinner - (thanx to Marlo's Aunt & Uncle for treating us all!), then did some shopping. It was a nice day. Sunday was an at home day as weather wasn't the greatest. Matt is having trouble sleeping at night - legs and feet getting crampy from lack of use. I'm trying to find a pool we can go to for exercise. But, he is still doing well on bends and flexion. Today (Tues) he got 100 and 105º on bends and his ankle flexion is still good - and all that with no meds - Mom forgot to give it to him!! He is getting stiff, but he's ok. So he is still doing well - almost at 2.25". We have an appt tomorrow for ex-rays to check his femurs to make sure we aren't turning too fast as we've been doing 5 turns every other day for a bit - hope we can stay on that schedule as we're not going to be here for full 3 months of turning otherwise. Just need to be sure that it won't cause troubles if we do, so we'd rather be safe. So, we'll talk to you all later in the week - still love to see some mail....hint, hint!!! Take care.

Matt Wuz Here!

Had a rough nite - kept waking up all through the nite - was late for therapy too. It wasn't Matthew either - he acutally slept quite well! Michelle says to make sure stretch hamstrings and ankles over weekend. Found a pool close by that does therapy - going to try to check it out tomorrow. It's only 13 mins. away. Could be good. Matthew left his mark on our room - a 'Matt Wuz Here' insignia - he ran his wheelchair into the wall and made a nice 'mailbox' slash in it! - I'm sure the house'll be impressed! No big plans for the weekend, other than getting out of the house. Talk to you later, take care.

We Got Mail!

FInally got some mail and our movies all at the same time yesterday! So Exciting! Many thanx to Cameron - Matthew's 3yr old cousin - for sending us special cards to let us know he is thinking of us. It meant a lot to both of us. Thanx also to D, N & the girls too! Therapy is getting a little tougher. The hamstrings and ankles are needing attention and the stretches are not fun! But, Matt gets through it all like a trouper! He is pretty wiped out for a while after therapy as it is such a workout. While he is there today I plan to take the extra van seat back to the rental place & re-sign for the 2nd month. Then we'll have more room in the van when it comes time to leave. 63 more days! Talk to you all over the weekend. Hope everyone is doing well - Take Care.

2nd Follow up

Had appt. with Dr. Standard at 11 am - Paley is away again. Therapy at 2pm. Meeting went well - growth measures 2.5 cm on femur and 2 cm on tibias - have to speed femurs up to 5 turns every other day and keep tibias at 4 as new bone is filling in very fast - will get exray done on 18th to make sure not turning too fast, then next appt. will be on 27th. Asked Michelle to concentrate on ham strings as they are getting tight. Had Pizza brought in again, then read and watched movies til late. Talk to you soon, - Please send mail!

Doing well with therapy.

Was supposed to talk to James Cox on Friday - re: fin. aid request, but he left early - need revised estimate for therapy 5 x / wk x 1 hr. as there's no pool. Matthew was fantastic at therapy! - 95º and 105º bends and ankle flexion is still good!! Couldn't believe it - we'll have to see what happens after the weekend. Weather wasn't the greatest - had a couple of lazy days - computers, tv, computers, caught a movie, went to mall - same old, same old. Hopefully weather will be better next week so we can get out a bit for some fresh air. Monday is our next full follow up, so we'll let you know how that goes. Hope all is well with everyone at home - Miss you guys! talk to you soon, M & P.

Limb Lengthening

Had land therapy today with Michelle - she is still pleased with status, then changed strut and had stitch removed with George. Out for dinner with Marlo and Lois - enough leftovers for all day tomorrow! House is very full with lots waiting to get in - busy place. We signed up for Netflix when we got here, but we're having trouble with getting mail! - Keeps getting sent to next building - it's very frustrating - we've only received 2 movies so far. We'll have to pull out the old favourites this weekend. Have a good weekend, Talk to you later.

Another easy day!

As therapy isn't until 2pm, we get up around 11 am, then meet Marlo and Lois for lunch at the cafeteria before heading to therapy for 2 pm, which is still not being a problem. We got back around 3:30 to find that it was Pizza night again. After doing a little work in our room, we went out and joined everyone for Pizza then had Marlo and Lois back to our room for a movie - another day is done - only 71 more to go - not that we're counting or anything !?! Take care.

New Month - New Therapist

Land therapy was with Michelle today. She is a therapist I had on the first leg surgery. I still managed to get 85º & 90º on leg bends, but the whole session took way too long. Too many breaks while she worked on other people, I'm gonna have to say something tomorrow if it happens again. By the way - it sure would be nice to get some mail! - Anybody, Anybody... (mailing address is on earlier blog) We have our next appt. for follow up booked for the 9th too - so hopefully all goes well between now and then. Well, see y'all tomorrow.

Trip to Zoo.

Went to the zoo today - saw more action there than I have ever seen at any zoo. - Polar bears were swimming laps, Rhinos were out and about, Gazelles were running, Chimps were swinging on ropes, Leopards were growling at us - it was pretty cool. Had another yummy meal supplied by the Buonforte family -many thanx for that! - Then it was back to the TV for us! Wish we could think of other stuff to fill our endless hours with. Matthew and Marlo have been doing puzzles - think that should work for them for a bit anyway. Talk to you later.

Long Weekend

We made plans to go back to Columbia mall with a couple of other patients/families on yesterday, and spent the day there - we left at 11:30 am and got home at 8 pm - We caught a movie matinee (The Guardian - which was really good), did a bit of shopping - Matthew's $25 winnings were burning a hole in his pocket - then had dinner at Cheesecake Factory (Umm, Umm, Good!). It was a good day. Today we stayed home, watched a couple of movies - had a pasta dinner compliments of Marlo's family from New Jersey, then will do some therapy/stretches before calling it a day. We going to try to go to the Baltimore Zoo tomorrow - although it may be closed - again due to Yom Kippur. Marlo and family got tickets to go and asked us to go along, so as we haven't been before, thought we'd check it out. Talk to you Monday.