I know that you all well expect me to be on top of my game (chuckle chuckle), so it might surprise you (ha ha ha) that I am just now letting y'all know that Lucas did not have surgery today. He was scheduled to have his final hypospadias follow up surgery today. We were planning to have his dentist jump in on the procedure for a few minutes to do dental x-rays while he was under anesthesia to prepare for a dental procedure of capping all of Lucas' molars. Due to his grinding, it is highly unlikely that his molars will last until they are replaced by his adult teeth. Capping them seems to be the best option to save his teeth and we are hoping it will be a turning point in the grinding as we have been informed that some children stop grinding after this is done. It was not going to work with both doctors' schedules since Dr Austin (urologist) has something in the morning and Dr Sedighi (dentist) is only available in the morning. We then rescheduled the hypospadias repair, but I inquired if it might be possible that we combine both procedures. It turns out that the answer is "Yes"! X-rays only take a few minutes, so Dr. Sedighi can do them in the OR before beginning the capping procedure. December 13th is a day that works for both doctors and St. Louis Children's Hospital. It is a bit further off, but we are in no dire need of either procedure. It is also before the end of the year so we won't have to have a chunk of deductible to pay. We are grateful to have only one anesthesia verses two, but we will be disappointed to miss the winter program at Lucas' school. It is always amazing. (That reminds me... We still haven't posted any video from last year's performance, have we? Oy vey. Sorry folks.)
Speaking of deductibles... We are working on getting some equipment purchased before the year ends also. Lucas was just cast for new DAFOs (braces to support his feet/ankles while standing/walking). We will get them in about two weeks. He was also just measured for new arm braces. These fit from about his mid forearm to mid upper arm. They keep him in one position and mostly help him calm down and focus his attention. He does better looking and purposeful reaching/touching when he is wearing them. He got his first pair last year. Trying those ones on him now, one might think they belong to a doll. He has grown so tremendously over the past year. The biggest equipment order in the works is his gait trainer (assistive walking device). We had tried to go through a smaller company, but it seemed to not be working. We ended up using a larger (ginormous) company, formerly United Seating and Mobility, now (even bigger since merging with another giant company) Numotion. The people who work there we've encountered have been very nice, but the company takes way too long to get things accomplished. We know one family who has been waiting since January for a wheel chair and Lucas' physical therapist told us about another person who has been waiting since February. I don't know why anyone would ever want to use a company with such a reputation regardless of how nice their reps are. I have been in touch with the company that makes the gait trainer that we want for Lucas. Mulholland is their name and they are FABULOUS! They have worked with us and for us day after day and week after week and we now have a smaller company set up to order the Gait Master. (That's what the model is called, the Mulholland Gait Master.) I don't think I can say enough how wonderful Mulholland has been. I will be eagerly recommending them to anyone and everyone. :)
Since Lucas is getting so big, we are looking into other equipment too. We are hoping to get a ramp for the front door, a new car seat and a toilet seat reducer. I am hoping that we can tap into some of the resources that are around St. Louis that we have yet to utilize. The first one is the St. Louis Regional Center, but there are many more. He is doing better with his walking since they are making him walk pretty much every day at school and I am looking forward to seeing double the improvement once we get the Gait Master. Just holding him under his arms and making him walk around the house is already getting easier though. The kid really is amazing. :) School picture day is upcoming as is another Special Olympics event. I will hopefully have some new pictures for y'all soon.
In other news, Eliana has her first field trip this week. She is still loving school and I think I might let her ride the bus for this trip. I know that she would get a huge kick out of it. She will likely be talking about it for months and months to come. She has become about the number one fan of PBS' Super Why. Her pronunciation, letter recognition and pre-spelling skills have grown dramatically. I still don't let her watch all the time or even every day, but I don't feel bad about that show. She's learning so much. Marc has been working tirelessly for quite a while now. He has moved into a new position at work, but has yet to hire a replacement for his (not yet) former position. He is therefore working both positions in addition to whatever else into which he may get pulled. We continue to be thankful for his job, but please join us in prayer for good workers to join him so that he won't burn out. As for me, I am trying to juggle a few new activities. We have begun a family support organization at Lucas' school. We are meeting monthly just to hang out and talk about our kids and resources and life. It's been really great. We are even working on setting up a clothing exchange, a library and maybe a food pantry. It is super rad to be a part of this and I love it. I have also made flyers and sign up sheets and it is on my agenda to work on a master contact sheet and e-mail about our next meeting. I have had some help from Marc on this and would rather someone else do it all together, but am biting the proverbial bullet and not sure how I'm managing. :) I have also started on the path to be a seamstress. I am working on large size cloth diapers for Lucas. I am sickened at how much we waste in disposable diapers. If I get really good (and this is likely a ways off) then I might even take to selling them to others who have big kids and similar mind sets. We'll see. I have other projects in mind too like large bibs for bigger kids and faster books (each page is a different kind of fastener: zippers, buttons, laces, snaps, etc). I'm not sure how to get anything done, but we'll see how it goes. I am also hoping to exercise more especially since I have been our of commission for so long post-prolotherapy and Lucas just keeps growing. I need to be strong enough to care for (and carry) him.
Blah blah all this to say, I need to get dinner going! I pray you are all well and will try to get something more to you soon! Blessings, dear friends!
