Sooo much to say, I'm sure, but I need to get Eliana down for a nap, so I will keep it basic and try to set aside a little more time for the post-op report.
Tomorrow morning, Lucas is scheduled for out patient surgery at St. Louis Children's Hospital. We are supposed to begin at 1000 and are to be there by 0815. The dental procedure will be first. He will be having 9 or 10 of his molars crowned in stainless steel. It is possible that one of his molars will have to be pulled as it has already endured too much grinding and there may not be enough of it left to crown. That will be determined in the operating room. They will take x-rays immediately and base their decision on them.
After Dr. Sedighi (the dentist) finishes his three to three and a half hour procedure, Dr. Austin will come in to close the final fistula. (That sounds like a great band name, right? Or something... The Final Fistula! OK, maybe I could use a nap too.) The hole is pretty tiny and in a "great location" for an easy fix. This will be the 5th surgery on his little boy business and we are delighted to now only see Dr Austin (who we think is fantastic!) passing in the halls or randomly at the zoo or something. His procedure is likely to be less than 30 minutes and should require no major special care after the fact. For both procedures, actually, I think he should be back to normal life on Saturday.
This is not an unfamiliar activity, out patient surgery, but we still look to the Lord to see us all through it. The last surgery, Lucas had a lot of seizures upon waking and I broke out in crazy hives all over the next morning. We are praying for no seizures, no vomiting, no allergic reactions and no anything else undesirable and unnecessary. We are praying for peace, wisdom and skill for all involved as well as for us and for Eliana and my dad who will be hanging at home. We are disappointed to be missing the winter production at Lucas' school, but are looking forward to hearing all about it and being a part of the future productions for years to come.
I will try to get on here in the next few days to give y'all a status update. For now, thank you for praying, for being with us in countless ways. We are immeasurably blessed by each one of you!
Thursday, December 12, 2013
Tuesday, October 1, 2013
Surgeries and other things
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!
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!
Tuesday, September 3, 2013
Argh!
I thought about rocking this post pirate style, but I only got as far as the "argh!". It seemed to sum it up enough... the fact that I do such a poor job of keeping you all updated. I'd apologize again, but that would just be redundant and I don't know how likely to improve in such matters I am.
Onto the update then?
Summer break has ended and summer is coming to a close. Here in St. Louis, it hasn't felt much like summer since the beginning of July, so we have not had nearly as much pool time as we had anticipated. It's all right though; with two mortgages, we are especially glad to have lower utility bills. :) Summer for us came with a light break followed by four weeks of summer school. I then got a series of injections in my neck, upper and lower back, elbows, knees and hips, totalling 129. The next six weeks were spent primarily with our new dear friend Kelly helping around the house. I like to refer to her as my Hoss Hauler or Moose Mover. (The boy is up to 60 pounds! He is growing all the time.) She has been a tremendous blessing for our family and we thank God that we have been able to bless her and her family as well. She began seminary school last week to get a theology degree. She does prison ministry, hanging out at the Max 5 men's prison and has been led to become a full time prison chaplin. We look forward to years more of friendship and symbiotic encouragement. :) She will also be providing care for our precious little ones while Marc and I go away for our first overnight since Lucas was born. (He wants to go away for a week for our 10 year anniversary next year. I am filled with trepidation at the thought of it. This is the first step in building up to a big trip.)
We had visits this summer from Marc's sister and brother-in-law and their adorable daughter, Michele, Dave and Darla. They were here just in time for the last of the pool weather. We also got to visit with our close friend Desiree. We always long for more of our favorite people, but will take and savor all that we can get. :) We also got a contract on our old house. We are set to close on Marc's birthday, September 24th, but it is possible that the closing will be moved up. The family who is buying the house has already moved in to the house and are renting from us for a month. They seem really great and we look forward to maintaining relationship with them. We are grateful to have the house all but sold and to have folks in it who seem to love it. It was a great house for us.
As for the gait trainer for Lucas... That is still up in the air a bit. The company that I had hoped to use to get it had some issues getting set up, I guess. I was informed of this after over a month of waiting. We then got in touch with the company who makes the equipment (Mulholland) and they referred us to a dealer we could use in the St. Louis area. Unfortunately, the company is huge and takes next to forever to make progress. Some really great people work there, but the process is, well, let's use the word frustrating and then let your imagination run wild as you think of waiting months and months for something to help your child that you know shouldn't have to be that way. (Perhaps you can hear the screaming I do inside my mind.) It has been about a month and we have yet to get the paperwork from the pediatrician that begins the official ordering process by proving the equipment is necessary. It took almost three weeks just to "generate the paperwork". With a smaller company, we could have had it to the doc and back in less than a week, easy. I have since been back in touch with Mulholland and they are quickly moving up the list of favorite people in my life! I am desperately hoping to get things sorted today to get a smaller company set up that we can use and get this equipment already!! Not being able to lift Lucas all summer and not having the gait trainer, I feel especially frustrated that he has not been getting the exercise he needs through most of the summer. By next update (which will be who knows when?) I am looking forward to sharing the joy of having Lucas wander about the house on his own. :)
We saw Dr. Austin a couple weeks ago and scheduled his fifth and final penis surgery! (Thanks, Mom for continuing to talk about embarrassing things!) He said that there will be no catheter and that he won't likely miss more than 1-2 days of school, including surgery day. His dentist, Dr. Sedighi, wants to come in to do x-rays while he's under. Dr. Sedighi wants to cap all Lucas' molars to save them from his grinding. He doesn't think that the teeth will last until he's 10-14 years old when the baby molars get replaced by adult teeth. If Lucas grinds them down too much, it could be pretty bad. In some cases, Dr. Sedighi says, children stop grinding after their molars are capped. We would be delighted if this was the case with Lucas. We'll see. After the x-rays, we will schedule the capping procedure. It will be about a 3 1/2 hour long deal while under anesthesia. So, that's going to be three times we'll put Lucas under this year. Next year, and for as many years as we can after, we're going for Nil! The surgery is scheduled for October first. It will, hopefully, be first thing in the morning because that is what works best for Dr. Sedighi to come in before going to his regular office. We like this better because it is less time we have to keep Lucas off food and drink. :)
We also increased Lucas' seizure meds a bit. I think that actually happened before my last post, I just forgot to include it. He is still having about 20-30 seizures most days, but we are pretty consistent. He is also maintaining a pretty regular sleep schedule which is good for everyone. Since I got the Prolotherapy (shots in my ligaments), Lucas has been riding the bus to school. When Kelly was around, she would help me get him to/home from school most of the time, but now he is riding the bus every morning and my friend Heidi who lives up the street and is a senior in high school (and is fabulous!) has been helping in the afternoons with pick up. I realize that I could let him ride the bus both ways, but I like to be with him and be a part of his day. I also don't like having him sit on the bus for an hour especially knowing it is Not his favorite. Clingy, over protective, whatever you may want to call me, I don't care. I love my boy and have no intentions of stopping. Once I can lift him myself a bit more, I will likely only have him ride the bus 2 days a week when I have to get Eliana to school by 8:30.
It seems that there is more to be said, with me there almost always is, but Eliana is looking at pictures and asking me to tell her about each one. A bit distracting and I am losing my concentration. I do, however, have some long promised pictures for you. Marc put them together, so I am not even sure what's in there, but it's been quite a while, so we hope you enjoy! Perhaps next batch of photos will include Eliana's first day of preschool (which she LOVES! - "what's your favorite part?" "My friends.") and Lucas' new smile as he has now lost two teeth (the second just this morning. I think he swallowed it. I guess it's a goner!).
I hope you all had a great weekend and some great summer moments. God is good and faithful and loving. There is much pain and struggle and injustice in this life, but God is eternal and nothing, bad or good, wrong or right will go without His judgment, eventually. I pray that you all choose to see and celebrate the good, the greens that turn our wasted breath to life for us again, the sun which warms our skin and lights our days, the smiles and laughter of children and friends, the comforting touch we so often need. I pray that you also lift unto God all that we do not know how to grasp, the violence and anger and deceit which abound, and I pray that we would not be drawn into it ourselves. I still don't understand how the morning of 9/11/01 as I stood three blocks north of the Twin Towers, all the people around me except my dear friend Hector seemed unable to do anything but scream curses and vulgarities. Even before the second plane hit. I heard no voices aside from mine and Hector's crying out to God, just anger and violence. Things are booming and warring all over the world, but perhaps we should take a little more time to remember ideas like MLK Jr had and inspired, beginning in our own hearts and lives by praying for our communities, our country and the world with the same attitude of love and peace. Let us be determined to love, and leave the vengeance to God. I pray you all know peace in spite of any and every storm and that you trust the One who can cause and calm it all. Blessings dear friends.
https://plus.google.com/photos/115015560003102714525/albums/5910963694979398177
https://plus.google.com/photos/115015560003102714525/albums/5910966236147799825?authkey=CL7Ho_aOwe__QQ
https://plus.google.com/photos/115015560003102714525/albums/5910967214566061073
https://plus.google.com/photos/115015560003102714525/albums/5910971659680141057
https://plus.google.com/photos/115015560003102714525/albums/5910974704045882529
Onto the update then?
Summer break has ended and summer is coming to a close. Here in St. Louis, it hasn't felt much like summer since the beginning of July, so we have not had nearly as much pool time as we had anticipated. It's all right though; with two mortgages, we are especially glad to have lower utility bills. :) Summer for us came with a light break followed by four weeks of summer school. I then got a series of injections in my neck, upper and lower back, elbows, knees and hips, totalling 129. The next six weeks were spent primarily with our new dear friend Kelly helping around the house. I like to refer to her as my Hoss Hauler or Moose Mover. (The boy is up to 60 pounds! He is growing all the time.) She has been a tremendous blessing for our family and we thank God that we have been able to bless her and her family as well. She began seminary school last week to get a theology degree. She does prison ministry, hanging out at the Max 5 men's prison and has been led to become a full time prison chaplin. We look forward to years more of friendship and symbiotic encouragement. :) She will also be providing care for our precious little ones while Marc and I go away for our first overnight since Lucas was born. (He wants to go away for a week for our 10 year anniversary next year. I am filled with trepidation at the thought of it. This is the first step in building up to a big trip.)
We had visits this summer from Marc's sister and brother-in-law and their adorable daughter, Michele, Dave and Darla. They were here just in time for the last of the pool weather. We also got to visit with our close friend Desiree. We always long for more of our favorite people, but will take and savor all that we can get. :) We also got a contract on our old house. We are set to close on Marc's birthday, September 24th, but it is possible that the closing will be moved up. The family who is buying the house has already moved in to the house and are renting from us for a month. They seem really great and we look forward to maintaining relationship with them. We are grateful to have the house all but sold and to have folks in it who seem to love it. It was a great house for us.
As for the gait trainer for Lucas... That is still up in the air a bit. The company that I had hoped to use to get it had some issues getting set up, I guess. I was informed of this after over a month of waiting. We then got in touch with the company who makes the equipment (Mulholland) and they referred us to a dealer we could use in the St. Louis area. Unfortunately, the company is huge and takes next to forever to make progress. Some really great people work there, but the process is, well, let's use the word frustrating and then let your imagination run wild as you think of waiting months and months for something to help your child that you know shouldn't have to be that way. (Perhaps you can hear the screaming I do inside my mind.) It has been about a month and we have yet to get the paperwork from the pediatrician that begins the official ordering process by proving the equipment is necessary. It took almost three weeks just to "generate the paperwork". With a smaller company, we could have had it to the doc and back in less than a week, easy. I have since been back in touch with Mulholland and they are quickly moving up the list of favorite people in my life! I am desperately hoping to get things sorted today to get a smaller company set up that we can use and get this equipment already!! Not being able to lift Lucas all summer and not having the gait trainer, I feel especially frustrated that he has not been getting the exercise he needs through most of the summer. By next update (which will be who knows when?) I am looking forward to sharing the joy of having Lucas wander about the house on his own. :)
We saw Dr. Austin a couple weeks ago and scheduled his fifth and final penis surgery! (Thanks, Mom for continuing to talk about embarrassing things!) He said that there will be no catheter and that he won't likely miss more than 1-2 days of school, including surgery day. His dentist, Dr. Sedighi, wants to come in to do x-rays while he's under. Dr. Sedighi wants to cap all Lucas' molars to save them from his grinding. He doesn't think that the teeth will last until he's 10-14 years old when the baby molars get replaced by adult teeth. If Lucas grinds them down too much, it could be pretty bad. In some cases, Dr. Sedighi says, children stop grinding after their molars are capped. We would be delighted if this was the case with Lucas. We'll see. After the x-rays, we will schedule the capping procedure. It will be about a 3 1/2 hour long deal while under anesthesia. So, that's going to be three times we'll put Lucas under this year. Next year, and for as many years as we can after, we're going for Nil! The surgery is scheduled for October first. It will, hopefully, be first thing in the morning because that is what works best for Dr. Sedighi to come in before going to his regular office. We like this better because it is less time we have to keep Lucas off food and drink. :)
We also increased Lucas' seizure meds a bit. I think that actually happened before my last post, I just forgot to include it. He is still having about 20-30 seizures most days, but we are pretty consistent. He is also maintaining a pretty regular sleep schedule which is good for everyone. Since I got the Prolotherapy (shots in my ligaments), Lucas has been riding the bus to school. When Kelly was around, she would help me get him to/home from school most of the time, but now he is riding the bus every morning and my friend Heidi who lives up the street and is a senior in high school (and is fabulous!) has been helping in the afternoons with pick up. I realize that I could let him ride the bus both ways, but I like to be with him and be a part of his day. I also don't like having him sit on the bus for an hour especially knowing it is Not his favorite. Clingy, over protective, whatever you may want to call me, I don't care. I love my boy and have no intentions of stopping. Once I can lift him myself a bit more, I will likely only have him ride the bus 2 days a week when I have to get Eliana to school by 8:30.
It seems that there is more to be said, with me there almost always is, but Eliana is looking at pictures and asking me to tell her about each one. A bit distracting and I am losing my concentration. I do, however, have some long promised pictures for you. Marc put them together, so I am not even sure what's in there, but it's been quite a while, so we hope you enjoy! Perhaps next batch of photos will include Eliana's first day of preschool (which she LOVES! - "what's your favorite part?" "My friends.") and Lucas' new smile as he has now lost two teeth (the second just this morning. I think he swallowed it. I guess it's a goner!).
I hope you all had a great weekend and some great summer moments. God is good and faithful and loving. There is much pain and struggle and injustice in this life, but God is eternal and nothing, bad or good, wrong or right will go without His judgment, eventually. I pray that you all choose to see and celebrate the good, the greens that turn our wasted breath to life for us again, the sun which warms our skin and lights our days, the smiles and laughter of children and friends, the comforting touch we so often need. I pray that you also lift unto God all that we do not know how to grasp, the violence and anger and deceit which abound, and I pray that we would not be drawn into it ourselves. I still don't understand how the morning of 9/11/01 as I stood three blocks north of the Twin Towers, all the people around me except my dear friend Hector seemed unable to do anything but scream curses and vulgarities. Even before the second plane hit. I heard no voices aside from mine and Hector's crying out to God, just anger and violence. Things are booming and warring all over the world, but perhaps we should take a little more time to remember ideas like MLK Jr had and inspired, beginning in our own hearts and lives by praying for our communities, our country and the world with the same attitude of love and peace. Let us be determined to love, and leave the vengeance to God. I pray you all know peace in spite of any and every storm and that you trust the One who can cause and calm it all. Blessings dear friends.
https://plus.google.com/photos/115015560003102714525/albums/5910963694979398177
https://plus.google.com/photos/115015560003102714525/albums/5910966236147799825?authkey=CL7Ho_aOwe__QQ
https://plus.google.com/photos/115015560003102714525/albums/5910967214566061073
https://plus.google.com/photos/115015560003102714525/albums/5910971659680141057
https://plus.google.com/photos/115015560003102714525/albums/5910974704045882529
Tuesday, May 28, 2013
Almost a first grader!
I'll begin where I should have a few days after my last post. We saw Dr. Austin for our post-op visit and had some good news and some not great news. He healed quite well. Well, except that there's another hole that will need closing. I told Dr Austin that We really like him, maybe we can get together and have dinner sometime, meet his wife and kids. I'm sure they're great. We would just prefer to not have to see him, in the office, or the hospital, or operating room. It was quite a major surgery that he preformed, basically re-doing the original surgery, re-recreating the urethra. The hole is at the very bottom and, he says, it's an easy fix. otherwise, everything looks great. We'll return to Dr. Austin in August to take a look and schedule his next (and FINAL!!!) surgery. It will likely be in late August or early September. The recovery should not be super complex or long lasting. He won't likely need a catheter, but we might have one for a few days to help ensure nothing else stays open that should be closed.
Lucas' last weeks at school were pretty great. I think we have found a gait trainer (walking aid) that will work for him that we will be purchasing this summer. It's the first one he has not screamed through it's use. Moreover, he has even seemed to enjoy himself, on occasion. We are hoping to have our rep, Craig, come out this week and try it in the house. Once we begin the ordering process, it shouldn't be too long before we get it. One of the main reasons we wanted to get a larger, more open house is so that Lucas can move about more freely on his own. We are looking forward to the progress he'll make even through the summer.
He has also grown tremendously and carrying him about is getting more challenging. We were at the pediatrician's office about a month ago and he weighed about 51 pounds. I weighed him again about three weeks later and he was 54 pounds. Oy vey! I think at the beginning of the school year he was only 46 pounds. That's a lot of growth! My body has some issues and moving Lucas around recently has been bringing those issues to light. We are trying to figure out how I can have some help around the house so that I don't have to lift him as much while I recover from a treatment to strengthen my ligaments (which hold bone to bone; mine are loose and not doing a very good job). It's a long recovery (8 weeks) and I'm not supposed to lift more than 20 pounds in that time. Sounds a bit ridiculous to some, perhaps, but I've had it done a few times in the past and it has worked and been the only thing I've found to work. We were thinking about having a college student stay with us, but now we are looking into hiring someone. If we find a service or ministry or person who works well with Lucas and our family, we may end up getting a few more date nights too, which would be nice. :)
Lucas' growth is exciting too. He is healthy and getting stronger. We have started having him walk up the stairs using his right leg, which he does Not favor, to strengthen it. I found him some fantastic velcro high tops that prevent his ankles from rolling, so we can do some stuff a little more casually around the house without having to get out his braces and sneakers that fit over his braces. They are great shoes for our function and they look super rad. :)
We celebrated his 6th birthday in Brooklyn after a three day birthday extravaganza for his cousin Darla's first birthday. We did take pictures, but I am not going to get to that today. We have pictures of other things too, some more special olympics and maybe a few other school activities as well as some pictures of our new house. That's right, folks; we finally moved!!! Eight months and five days after we bought the house, we moved into it. It's amazing and big and beautiful. There has been such an increased ease in living since moving too, perhaps due to the simplicity of only living in one place, perhaps due to the fact that the television is in the basement and hardly gets turned on anymore. It's likely many things culminating together. Bottom line: it's good to be home!
We are on break this week and summer school begins next week. It will just be from 8-12, M-Th and he won't have music or art classes, but he will still be getting some therapy and, hopefully, get to work on riding a new bicycle the school is supposed to be getting this summer. If it doesn't come in time, he's going to certainly be on it when his first grade year beings in August!
I am certain there is more to say, but I need to feed the children and, perhaps, myself. We continue to thank God for all of you and pray that you would seek Him and know Him. He loves us so much and longs for us to realize it.
Blessings!
Lucas' last weeks at school were pretty great. I think we have found a gait trainer (walking aid) that will work for him that we will be purchasing this summer. It's the first one he has not screamed through it's use. Moreover, he has even seemed to enjoy himself, on occasion. We are hoping to have our rep, Craig, come out this week and try it in the house. Once we begin the ordering process, it shouldn't be too long before we get it. One of the main reasons we wanted to get a larger, more open house is so that Lucas can move about more freely on his own. We are looking forward to the progress he'll make even through the summer.
He has also grown tremendously and carrying him about is getting more challenging. We were at the pediatrician's office about a month ago and he weighed about 51 pounds. I weighed him again about three weeks later and he was 54 pounds. Oy vey! I think at the beginning of the school year he was only 46 pounds. That's a lot of growth! My body has some issues and moving Lucas around recently has been bringing those issues to light. We are trying to figure out how I can have some help around the house so that I don't have to lift him as much while I recover from a treatment to strengthen my ligaments (which hold bone to bone; mine are loose and not doing a very good job). It's a long recovery (8 weeks) and I'm not supposed to lift more than 20 pounds in that time. Sounds a bit ridiculous to some, perhaps, but I've had it done a few times in the past and it has worked and been the only thing I've found to work. We were thinking about having a college student stay with us, but now we are looking into hiring someone. If we find a service or ministry or person who works well with Lucas and our family, we may end up getting a few more date nights too, which would be nice. :)
Lucas' growth is exciting too. He is healthy and getting stronger. We have started having him walk up the stairs using his right leg, which he does Not favor, to strengthen it. I found him some fantastic velcro high tops that prevent his ankles from rolling, so we can do some stuff a little more casually around the house without having to get out his braces and sneakers that fit over his braces. They are great shoes for our function and they look super rad. :)
We celebrated his 6th birthday in Brooklyn after a three day birthday extravaganza for his cousin Darla's first birthday. We did take pictures, but I am not going to get to that today. We have pictures of other things too, some more special olympics and maybe a few other school activities as well as some pictures of our new house. That's right, folks; we finally moved!!! Eight months and five days after we bought the house, we moved into it. It's amazing and big and beautiful. There has been such an increased ease in living since moving too, perhaps due to the simplicity of only living in one place, perhaps due to the fact that the television is in the basement and hardly gets turned on anymore. It's likely many things culminating together. Bottom line: it's good to be home!
We are on break this week and summer school begins next week. It will just be from 8-12, M-Th and he won't have music or art classes, but he will still be getting some therapy and, hopefully, get to work on riding a new bicycle the school is supposed to be getting this summer. If it doesn't come in time, he's going to certainly be on it when his first grade year beings in August!
I am certain there is more to say, but I need to feed the children and, perhaps, myself. We continue to thank God for all of you and pray that you would seek Him and know Him. He loves us so much and longs for us to realize it.
Blessings!
Sunday, March 10, 2013
Post-op Update
God is good, better than we could ask or imagine. My only real concern going into this surgery was Lucas' fasting. He doesn't do well not eating when he wants to eat, and he typically wants to eat. He did amazingly though, of course. He was a little grumpy when we moved him into the bed in our assigned room for the day, but I think that was more to do with his dislike of being pulled and labeled and examined. :) He did also scream pretty much the whole drive to the hospital, but that is still a pretty normal thing, crying in the car.
The surgery was on schedule. I was allowed to come back into the OR with him (which is a beautiful OR and got the nurse-on-hold in me a little itchy to do something nursey). I stayed until he was knocked out by the gas, kissed his handsome face and headed back to wait for news with Marc. They called part way through the surgery to tell us all was going well and Dr. Austin was in our room talking with us before one o'clock. He said that it went according to plan with no complications, but that he wants his to have a catheter in place for two weeks (not totally surprising) with a bag attached (that was unexpected). He wants to make sure that this will be the last surgery the sweet little guy will ever need on his sensitive parts, hence leaving the catheter in place for so long, and reduce the risk of infection, hence having the catheter empty into a bag instead of into his diaper where it can be infiltrated by nasties from the other side. I am totally supportive of this, I was just not prepared for it.
We will be laying low and staying home, pants-less (well, not all of us), for the next two weeks. Marc's mom found some tearaway/snap together pants for him that I should be able to get on and off him without much complication. With the catheter bag attached to him, pulling pants on and off is not something we are interested in doing. I am sure they will be getting some good use as I am trying to keep layers between his set up and his grabbing hands.
I think he's doing pretty well thus far. I am planning to remove the dressing (bandage) tomorrow. We will be doing sponge baths only, but I doubt Lucas will mind that. He also won't be sitting anywhere with a central divider in the seat. We are hanging on the couch and in his bath chair (which I pulled into the living room). I am sleeping in his bed with him which is not the most comfortable for me, but is entirely doable for my sweet prince. He has given a quick tug here and there, including in his sleep and that has caused some major pain, but otherwise, he seems to be recovering all right.
This will put us back a little more on getting into the new house, but while I am here, I am going to try to get some cleaning and packing stuff done around here, at the 'regular house'. Speaking of which, I am going to try to get a little laundry folded and dinner started before Lucas wakes up. Once he wakes, I have to sit on him, actually just his feet, so he doesn't squirm injuriously and hold his hand so he doesn't grab.
Thank you for all your prayers and standing with us in faith.I will try to get out another update soon. to let you all know how the healing is progressing. Since I am going to be working to impress my tush into this couch, I'd say the odds are much better than usual that I will actually follow through with my good intentions. :)
Blessings and love!
The surgery was on schedule. I was allowed to come back into the OR with him (which is a beautiful OR and got the nurse-on-hold in me a little itchy to do something nursey). I stayed until he was knocked out by the gas, kissed his handsome face and headed back to wait for news with Marc. They called part way through the surgery to tell us all was going well and Dr. Austin was in our room talking with us before one o'clock. He said that it went according to plan with no complications, but that he wants his to have a catheter in place for two weeks (not totally surprising) with a bag attached (that was unexpected). He wants to make sure that this will be the last surgery the sweet little guy will ever need on his sensitive parts, hence leaving the catheter in place for so long, and reduce the risk of infection, hence having the catheter empty into a bag instead of into his diaper where it can be infiltrated by nasties from the other side. I am totally supportive of this, I was just not prepared for it.
We will be laying low and staying home, pants-less (well, not all of us), for the next two weeks. Marc's mom found some tearaway/snap together pants for him that I should be able to get on and off him without much complication. With the catheter bag attached to him, pulling pants on and off is not something we are interested in doing. I am sure they will be getting some good use as I am trying to keep layers between his set up and his grabbing hands.
I think he's doing pretty well thus far. I am planning to remove the dressing (bandage) tomorrow. We will be doing sponge baths only, but I doubt Lucas will mind that. He also won't be sitting anywhere with a central divider in the seat. We are hanging on the couch and in his bath chair (which I pulled into the living room). I am sleeping in his bed with him which is not the most comfortable for me, but is entirely doable for my sweet prince. He has given a quick tug here and there, including in his sleep and that has caused some major pain, but otherwise, he seems to be recovering all right.
This will put us back a little more on getting into the new house, but while I am here, I am going to try to get some cleaning and packing stuff done around here, at the 'regular house'. Speaking of which, I am going to try to get a little laundry folded and dinner started before Lucas wakes up. Once he wakes, I have to sit on him, actually just his feet, so he doesn't squirm injuriously and hold his hand so he doesn't grab.
Thank you for all your prayers and standing with us in faith.I will try to get out another update soon. to let you all know how the healing is progressing. Since I am going to be working to impress my tush into this couch, I'd say the odds are much better than usual that I will actually follow through with my good intentions. :)
Blessings and love!
Friday, March 8, 2013
Big day for the little guy (though he's a rather big little guy)
I should have posted this yesterday, but I forgot until I was comfortably in bed last night and I had no intention of rising again. I trust all who need to see this will see it.
The surgery to narrow the created urethra is scheduled for this morning at 1030. We were hoping that we might get to reschedule for the 19th so that he wouldn't miss any school (spring break begin the 18th), but that didn't happen. He will miss school today and return next week until Wednesday or Thursday, I am thinking. He will likely have a catheter in place for at least a week, so nurses will have to do all diaper changes, but they are wonderfully willing. (Thank you Angela and Stephanie!! We love you ladies!)
Lucas is not allowed to have anything after 700 this morning and he only gets water and apple juice slushie. (We put his medicine in the slushie, but he's not really into it like he would be if it was 90 degrees outside.) He woke at about 600, I think because he didn't want to be denied having some drinks. Now, at about 10 to 700, he is drifting back to sleep after having a big seizure.
I, honestly, feel absolutely no apprehension. I trust him completely in the care of his Maker and know that He loves Lucas more than I ever could. I imagine it also helps that we have been through this so many times before without issue. I do still ask that you join us in prayer, as trusting God does not mean neglecting to speak to Him about any and everything. We are praying, of course for the safe and skillful surgery, for all the staff who will be caring for him today, pre-op, in the OR and post-op. We are praying that he would be aware at all times of the Lord God Almighty's presence with him. (This is an every day, not just surgery day prayer.) We are praying that he would be alert and dancing and growing stronger and larger in spirit even while his mind and body are sedated. We are praying that he would not want for anything in the stretch of time between 700 and anesthesia when he is not allowed any intake. We are praying that Eliana has a great time with her cousins Thomas, Nate and baby Joshua while we are at the hospital. We are praying for a quick and beautiful recovery. Though we still ask, we ask in faith, believing that what we ask we will receive, not like "The Secret", but because we know God and have tasted His goodness. We trust Him and believe what He has promised, that He loves Lucas more than the sparrows and will adorn him more magnificently than the most beautiful flower. This is true for all of us, not just Lucas. We all do well to remember His love for us, undeserving (as love is not something that could ever be deserved), immeasurably abundant, merciful, self-sacrificing love.
700 has crept upon me and I need to wake the husband and get ready to go. Thank you all again for your love and support. You are all treasures in our lives.I will try to update either later today or tomorrow.
Blessings, beloveds!
The surgery to narrow the created urethra is scheduled for this morning at 1030. We were hoping that we might get to reschedule for the 19th so that he wouldn't miss any school (spring break begin the 18th), but that didn't happen. He will miss school today and return next week until Wednesday or Thursday, I am thinking. He will likely have a catheter in place for at least a week, so nurses will have to do all diaper changes, but they are wonderfully willing. (Thank you Angela and Stephanie!! We love you ladies!)
Lucas is not allowed to have anything after 700 this morning and he only gets water and apple juice slushie. (We put his medicine in the slushie, but he's not really into it like he would be if it was 90 degrees outside.) He woke at about 600, I think because he didn't want to be denied having some drinks. Now, at about 10 to 700, he is drifting back to sleep after having a big seizure.
I, honestly, feel absolutely no apprehension. I trust him completely in the care of his Maker and know that He loves Lucas more than I ever could. I imagine it also helps that we have been through this so many times before without issue. I do still ask that you join us in prayer, as trusting God does not mean neglecting to speak to Him about any and everything. We are praying, of course for the safe and skillful surgery, for all the staff who will be caring for him today, pre-op, in the OR and post-op. We are praying that he would be aware at all times of the Lord God Almighty's presence with him. (This is an every day, not just surgery day prayer.) We are praying that he would be alert and dancing and growing stronger and larger in spirit even while his mind and body are sedated. We are praying that he would not want for anything in the stretch of time between 700 and anesthesia when he is not allowed any intake. We are praying that Eliana has a great time with her cousins Thomas, Nate and baby Joshua while we are at the hospital. We are praying for a quick and beautiful recovery. Though we still ask, we ask in faith, believing that what we ask we will receive, not like "The Secret", but because we know God and have tasted His goodness. We trust Him and believe what He has promised, that He loves Lucas more than the sparrows and will adorn him more magnificently than the most beautiful flower. This is true for all of us, not just Lucas. We all do well to remember His love for us, undeserving (as love is not something that could ever be deserved), immeasurably abundant, merciful, self-sacrificing love.
700 has crept upon me and I need to wake the husband and get ready to go. Thank you all again for your love and support. You are all treasures in our lives.I will try to update either later today or tomorrow.
Blessings, beloveds!
Saturday, February 16, 2013
Not so long, long ago
I am not sure that I have a ton to update for now, but I wanted to let you all know a few things. We have been to the neurologist, urologist and ophthalmologist in the past couple of weeks.
The neurologist was fine. I really like him. We are increasing the ONFI (clobazam), the drug he took from Canada years ago. We have had about a 50% decrease in seizures. We still have some decreasing to do and are slowly doubling his dose. We will see Dr Altman again in six months unless we have any issues between now and then.
We saw the urologist because we have continued to have stinky and occasionally purple pee. After having some discussion we decided to go ahead and schedule a surgery to narrow the created urethra. (Come on, Mom! More talk about my boy parts!?!) The theory is that stuff is getting stuck in that area, since it is so large, with such a small exit. Dr. Austin wants to go in and scope it out and then trim it down. It will be an outpatient procedure, but he will likely have to have a catheter in place for at least a week while everything heals. As of today, the surgery is scheduled for March 8th and Lucas is set to be the 2nd or 3rd case of the day. Lucas' spring break does not begin until March 18th, so he would have to miss some school. It is possible that we will be able to reschedule for the 19th, but it is only a slim possibility. Regardless, he is unlikely to take priority in the order of things which means he will not be allowed to eat all day. We have been blessed to have the first surgery of the day in years past, so it hasn't been too bad. If he doesn't go under the knife until later in the day, that would be a challenge. We are asking that you please join us in praying about this. God's grace is more than enough, always and we have seen His loving hand in our lives, in Lucas' life, countless times, in countless ways. We know He is faithful and will carry Lucas through this and we will look back on it as another joyous victory. :)
The ophthalmologist said that at this time Lucas' eye drift, though it still happens a lot, is not anything he would like to surgically address though he might again at some point in the future. He said that it would be about a 50-50 chance of making it better or making it worse. Also, his prescription has not changed, so that is good news.
I am sure there is more to say and I know I have some pictures that need posting, but now I am off to try to get some work done on this house that we have yet to make our residence. We are almost there. We are hoping to finish everything in the next two weeks and be moved in the next three weeks. I've been sick for about 5 weeks and this past week Lucas and Eliana both got sick too. Hopefully we will all be and stay well and get things finished already! We'll see and I'll get you pictures of that too when it happens.
Abundant blessings and thanks for standing with us and loving us. We are truly blessed and grateful!
Love you all!
The neurologist was fine. I really like him. We are increasing the ONFI (clobazam), the drug he took from Canada years ago. We have had about a 50% decrease in seizures. We still have some decreasing to do and are slowly doubling his dose. We will see Dr Altman again in six months unless we have any issues between now and then.
We saw the urologist because we have continued to have stinky and occasionally purple pee. After having some discussion we decided to go ahead and schedule a surgery to narrow the created urethra. (Come on, Mom! More talk about my boy parts!?!) The theory is that stuff is getting stuck in that area, since it is so large, with such a small exit. Dr. Austin wants to go in and scope it out and then trim it down. It will be an outpatient procedure, but he will likely have to have a catheter in place for at least a week while everything heals. As of today, the surgery is scheduled for March 8th and Lucas is set to be the 2nd or 3rd case of the day. Lucas' spring break does not begin until March 18th, so he would have to miss some school. It is possible that we will be able to reschedule for the 19th, but it is only a slim possibility. Regardless, he is unlikely to take priority in the order of things which means he will not be allowed to eat all day. We have been blessed to have the first surgery of the day in years past, so it hasn't been too bad. If he doesn't go under the knife until later in the day, that would be a challenge. We are asking that you please join us in praying about this. God's grace is more than enough, always and we have seen His loving hand in our lives, in Lucas' life, countless times, in countless ways. We know He is faithful and will carry Lucas through this and we will look back on it as another joyous victory. :)
The ophthalmologist said that at this time Lucas' eye drift, though it still happens a lot, is not anything he would like to surgically address though he might again at some point in the future. He said that it would be about a 50-50 chance of making it better or making it worse. Also, his prescription has not changed, so that is good news.
I am sure there is more to say and I know I have some pictures that need posting, but now I am off to try to get some work done on this house that we have yet to make our residence. We are almost there. We are hoping to finish everything in the next two weeks and be moved in the next three weeks. I've been sick for about 5 weeks and this past week Lucas and Eliana both got sick too. Hopefully we will all be and stay well and get things finished already! We'll see and I'll get you pictures of that too when it happens.
Abundant blessings and thanks for standing with us and loving us. We are truly blessed and grateful!
Love you all!
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