Post-Op Check

Yesterday was Maxim's first post-op check with Dr. Reinhart. It has been 1 1/2 weeks now since the hip reconstruction. The x-rays look very good but did confirm the doc's gut feeling that they will need to go back in later, sometime in the next 6-9 months. At that point, Maxim's femur, which was shortened, will have healed well and it will be time for the plate in it to come out. This will be the perfect time to go back in and further shape a sort of shelf on his right hip socket so that there will be the best cap over his femur as it fits in there. Right now, everything is just barely in place there, and Dr. Reinhart wants to "tweak" it so dislocation is no longer a worry. Okay, that's all very wordy, but basically it all looks very good after just one surgery. Maxim is a work in progress, and we are happy with the achievements so far.
We are scheduled to go in on June 30 for removal of this cast. Yeah! Somehow, knowing it will be in June is a psychological boost to this Mama. A blessing to Maxim as well, since we will most likely avoid the hottest days of the summer.
Although the spica cast, which extends from mid-rib all the way to the toes, limits Maxim a lot, he is able to roll himself over (but needs help often to get back in the other direction). He can scoot himself forward on his belly a little; for example to adjust position on his bed of pillows while resting on the floor, or reaching for an object a very short distance away from him. We are thankful for any mobility independence he has at the moment but concerned about how he is sort of disappearing. Maxim's greatest strength has always been in his upper body because that is what he has used to do everything. Incredible abs from hauling himself up and down off of furniture, arm strength from the same thing plus propelling himself on the floor, etc. From lack of motion aggravated (necessarily) by the casting, he is losing any muscle mass left in his legs (very little even when we brought him home) and we are noticing his arms decreasing in size. He does not have nearly the appetite he had when we first brought him home so I have to be careful that whatever does go in is both enjoyable and most beneficial for healing and strengthening this little guy. It's not that he has been completely refused to eat in any abnormal way (only when he wants to keep playing or when he is not feeling good to begin with) but he just doesn't want the quantity he did at first. In the beginning, he would observe how much Daniel ate and if he took seconds, and want the same portions. Maxim would ask for as much as Daniel had and put it all away. Now he seems to have a more appropriate guage for when to stop (with the exception of the day one of the older kids left a candy basket friends had given Maxim just a little too close, and he ate five different items before I realized what was going on).
Anyway, if you have suggestions for putting great nutrition into Maxim, I am open to ideas.


Here is Maxim waiting for Papa so they could go on a bike ride together on Memorial Day. Daniel made the trailer for Cyan originally and created a special harness to keep Maxim in.


Here are some things I notice as we are into Maxim's fifth month in America.

1. He still resorts to rocking himself for comfort occasionally. I take it as my cue to cuddle a little, chat or rub his back. Something that lets him know there are others who can comfort him. He is not alone anymore.
2. He is still looking to see if no means no. Does it only stand when Mom says it but not Dad? He tests this regularly.
3. When he cries, which is not very often, it is very much like a small baby. Cyan, his big sister, has a certain infantile startle reflex that has remained becuase of her cerebral palsy. Things that would not make the typical seventeen year old jump out of their skin still cause her to do so. Maxim does not have this startle reflex but his body language when he cries is sort of infantile. He curls up his fists, stiffens up and and the sound is not exactly like a newborn by any means but not what you might expect from an almost seven-year-old either. I can't quite put my finger on it, but when an older child or adult cries, they usually move somehow and there is some kind of obvious release achieved and then the crying subsides. In Maxim, and in little babies, there is sort of the winding up for the big cry, but they almost need some kind of encouragement to let it out and then actually relax again. Does that make sense? Anyway, of course, I hope Maxim feels the need to cry as little as possible, not because I don't want to put up with it, but because I wish him as little sorrow as necessary.
4. Maxim really likes to help, even in the spica cast. We have figured out places to put the blender, mixer, etc. so he can reach them and help with baking and other food prep. I am learning, the same way we are continually learning with Cyan, that there are a million things the disabled can accomplish. We must not be too quick to say no when they want to participate in some activity, out of some crazy assumption about what they are and are not capable of.
5. While he does not hide it if he's mad about something, he very rarely holds a grudge for long.
6. He is listening to and watching EVERYTHING.
7. He remembers the names of relatives he has not even met face to face yet (i.e. G'mo and Uncle Dean) and thanks God for them in almost every prayer.
8. Riding in the van while lying on his back in the special sling, he can still tell when we have made the turn onto our street.

Pain meds are down to about ten hours apart, if that, so considering how recent surgery was and all that they did, even into bone, Maxim is doing really well. I do sometimes wonder how much is the pain meds, how much is a truly high pain tolerance, how much is just the tough "go-it-alone" coping of a post-institutionalized child, etc. But then I remember Who our Mighty Father is and I choose to give Him all the credit.


Last night, Cyan and Brina had a dance recital. They have been learning Hebraic worship and folk dance for the last two years, with Aunt Shannon as their teacher. The class performed for about one hour solid, with refreshments served afterward.


As Maxim relined in his wheelchair, he noticed balloons from a recent graduation party caught in the rafters above. A very kind dad who happens to be quite tall, stood on a bar stool and stretched to bring them down for Maxim. He always likes seeing them at the store but this is the first time he's had his own to play with. He really enjoyed them before bed last night and wanted them right away when he woke up this morning. Right now he is conked out on his pillows with them. Sweet sweet.

ON ANOTHER NOTE: I recently mentioned my desire to write in a more broad way, not sure of the proper venue. Well, I'm off on another blog. You can take a peek at it by going to my profile and looking at the list of my blogs.