I guess I seemed a bit overwhelmed in my last post. I got a lot of feedback about people's experiences with the arrival of baby number 3 throwing the balance. I think I have heard this about the second and the fourth too. After four, I hear it's all a blur. I don't know that I am super overwhelmed with three kids. We've had a rougher start than I would have preferred and it is true that I am not part octopus and still have only two arms with two hands at the end of them. I find myself reminding the children of this by asking, "How many children does Mommy have?" Sometimes the answer is three, sometimes four as Marc gets included in that count on occasion based on his behavior. :) I did ask this question when there were only two (or three with Marc) also. I am one of six children, (seven including my sister who didn't grow up in our house), and I don't know how my parents did it. My guess is that they don't either.
I love being a mom though. It's something that I have longed for since I was a young child. I remember being four years old and confidently thinking that I wanted to have seven children, a combination of my blood and adopted. I don't know why seven. I only had one or two little brothers at the time. Little brothers three and four were not even on the horizon. Seven was the number though. I held on to that number into adulthood. After such a rough (sick) pregnancy with Evangeline and then the crazy sleepless labor and delivery, my OB said to us (it took a lot of research and conversation to convince him to let me try for the natural route vs a repeat c-section) that now that I have done it this way (naturally), I can have seven more the same way. There was that seven again. This time, however, I thought, "I think I'm good." I do still like the idea of adopting, but we aren't at that point yet either. For now, learning how to be a two armed octopus with a complete skeleton is enough. :)
I'm glad to report that Lucas is doing much, much better. He started turning last Wednesday night/Thursday morning. He got up that morning at a reasonable hour and ate breakfast. It was the first day in three weeks he had done so. I don't know what changed though the prayers of so many faithful friends I am certain had something to do with it. We began treating him for a urinary tract infection (UTI) because his urine culture grew E. coli, but his urinalysis was fine, so he likely did not have a UTI, but the sample I collected was contaminated. It happens a lot. His blood work was also negative for both cytomegalovirus (CMV) and Epstien-Barr virus (EBV), the two primary culprits behind mononucleosis (mono). We took him to the ophthalmologist for his yearly exam and Dr. Lueder said that there were no signs of pressure to suggest a shunt malfunction (and that his astigmatism has returned in the right eye and is now present in the left eye as they are working to balance their abilities apparently), but we made an appointment with the neurosurgeon's office anyway to check his shunt. It's fine. I didn't think that there was a UTI or a shunt malfunction, but it's good to cover the bases when we don't know what's happening. I thought it was mono and it wasn't so... My bottom line with Lucas remains about the same: I don't know. He is a fascinating case, our sweet moose. :)
Thankfully, whatever had been afflicting him seems to be at bay. His seizure activity has dropped back off and has been even lower in number than it was before getting sick. The severity has remained higher and he has continued to demonstrate some new seizure presentations, but overall, he is back to Lucas, back to smiling and snuggling and squealing and eating. :) Our amazing boy.
Again, I am sure that there is more to say; there always is. I know that I have left most of you in the dark for a long time about the goings on in the life of Lucas. Now, however, I want to get back to my Saturday morning with my family, a time I savor and hate to miss. Before signing off for I don't know how long, I would like to leave you with this: I was talking and praying with our dear friend Desiree late one night last week while Marc was out of town. (I decided to seize an opportunity I don't have often enough even though it meant a greater lacking in sleep.) I don't remember if it was something she said in conversation or something she prayed, but she mentioned "the joy of the Lord is [my] strength". It hit me hard because it is so true. I am weak. I am tired - all the time. I am brokenhearted to see my son, my beloved son suffering. I am brokenhearted to see my community suffering. (We live in the now world famous Ferguson - and we love it.) I struggle to balance my time. I don't even shower most days. There are countless things that I long to do - keep my house clean and organized, read more with my children, sew, read (for myself), shower, sleep, garden, design toys and clothing and household gadgets beyond the wonderings of my mind, etcetera. Not to mention things like see Lucas walk and run and dance like I've seen in my dreams or hear him talk and sing and see him look at me, holding my gaze from across the room. I long for so much, but in the midst of my longing that seems without measure, I am satisfied because the joy of the Lord IS my strength.
To think of my longings compared to my joys, the scale is tipped so much that as my list of thanks continues, the pain of longing is so far removed from me that I almost cannot see it and I am comforted. I have a house with a roof, walls and secure doors. I have electricity, running water that's clean and even hot if I want it to be, I have toilets that flush - two of them, I have heating and cooling, clothes, blankets, beds, pillows, dishes, Food, and so much more. I have a husband who loves me and our children and our community. I have three amazing children. Yes, my son is not a "typical" boy, but it is impossible to imagine life without him. He is a vessel of joy and peace and comfort in the form of an almost eight year old boy. Ask anyone who has sat with him; he will change your life. Everything is all right when snuggling Lucas. Everything. Looking at the countless blessings in my life, the most obvious in the forms of family and faithful friends, I am convinced again and again of the love of God, the greatest blessing of all. He comforts me, consoles me, encourages me and strengthens me. He fills me with joy and I am not only able to trudge through life, but to savor it for all its wonderful delicioiusness.
It's my prayer that you would have hearts filled with thanksgiving for the good that abounds, that you would be moved to celebrate every raindrop as it is a reminder of the rainbows, even if you never see the rainbows. God is good. Moving into Spring is a perfect time to be blown away by the new life that awaits us if we take hold. Soften your hearts, rejoice in the good even in the midst of the pain.The butterfly couldn't fly if it didn't first endure the long dark and the hard struggle into the light.
Bless you all. I remain forever thankful for you. May the joy of the Lord be your strength as well.I'm off to snuggle my boy now!
Saturday, March 14, 2015
Wednesday, March 4, 2015
If time travel were possible...
I don't know that I'd take advantage of it. I think that we all likely have things we would rather have said or done differently, but then where would we be now? How many other things might have changed by altering one tiny thing? I don't know. Maybe it would be cool. Maybe it would be good even. Maybe there would be more updates on this blog. Then again... Maybe not.
I find myself again at the computer after a severe writing drought. I am certain there are too many things to say in a short amount of time as there is no guarantee how long this baby in my lap will be satisfied with her toy, and I'm likely to forget a bunch of stuff too. I am mostly driven to write now because Lucas is having a rough time and my mom encouraged me to share the news and get others on board to pray for him. This seems to be the most efficient way to do that.
This whole school year has been a bit off, I think. He began ok with a new teacher this year (who is wonderful and we love her and her team!!), but I think that having Evangeline has taken a huge toll on me and that has affected everything else. To sum up: After four sleepless nights of labor, she came in a bit of a whirlwind, all naturally after the other two were c-sections. I was beyond exhausted and haven't had much rest since. She had some feeding issues and I had be up most hours in the day to keep on a very regimented feeding schedule. She finally made it back to her birth weight at 6 weeks old (normal is by 2 weeks old). It did take me away from my family and even my own sanity quite a bit though. One (myself being that one) would think that with a third child things would be simple, clear, predictable, manageable, but no. Not in this case. My other two kids had no issues with eating. I didn't have to attempt to force feed anything. They didn't have to have the underside of their tongues lasered. Blah blah blah. She's doing great now, but I am still on the cusp of myself, just beginning to crawl out of the hole. Evangeline will be 6 months old on Friday. I never would have guessed it would be such a recovery. My sweet family, my sweet boy, they have been rather neglected I think.
I don't know how much that weighs in, but I am sure it accounts for something.
Anyway... More recently, Lucas got sick. He had a lot more seizures than normal at school then came home and vomited. Eliana had just been sick two days earlier, so I thought it could be related, but she didn't have a fever. Lucas did.I didn't actually see him vomit. I was bouncing a fussy baby and didn't hear him either. It is entirely possible that he vomited due to having a seizure. (That has happened several times.) Anyway, he ended up a mostly lethargic boy for about a week with temperatures ranging from 99-almost 104. When I brought him to see the pediatrician, he had already been sick 5 days. She gave him some antibiotics in hopes that it was just a bad bacterial infection in his adenoid gland which was swollen so that it looked like he might be harboring a tennis ball in his throat. After 3 days on the antibiotics, the fever was gone and he looked more like he had a ping pong ball in there. He was also staying awake more and acting much more like himself when awake.
Even though he was still sleeping a ton, we started sending him to school again.We sent him all last week. He finished the antibiotics Thursday. I know that they continue working for a while after the Rx is completed, so I wasn't super concerned that he wasn't entirely improved, but as he has continued to sleep around 20 hours a day, I called the doctor's office again. She ordered some blood work and a urinalysis. I am confident that he does not have a urinary tract infection (UTI), but understand the need to rule it out. She wants to check his basic blood panel and also to see if he might have some viral infection such as (this is the number one theory, I think) mono. We won't have the results for a few days, maybe not until early next week, but hopefully the answer will be there.
After we get those results, our next call is very well going to be to the neurologist. As Lucas came out of total lethargy, his seizures have been weird and not good. Being sick can increase/alter seizure activity, so I want to know about the sick first. He has demonstrated in the past 2 weeks at least three new seizure presentations atypical from his norm. He had already begun to have some grand mal seizures with generalized body jerking like most people imagine seizures to appear, but that he has never had before the past 3 months. Now, he is doing all kinds of funky things including seizing in his sleep which hasn't been an issue in the past. (He has them frequently as he is waking or sometimes as he is falling asleep, but not while he is asleep in the night.)
I am tempted to call Dr Altman now (the neurologist), but know that there isn't much to do until we get him healthy. We just increased his medications about 2 months ago since his seizures have increased in severity. I don't know that what is happening with his seizures now is due to his illness (whatever it is) or if it is something else, so we will wait it out a little longer and hopefully have some answers soon.
I need to get to Eliana's school now. My boy is still asleep after his 40+ seizures so far today (a normal day total is less than 30, usually less than 20) and my baby is screaming and especially grumpy and I hope not sick. Thank you all for praying I will try to update when I get his blood work results.
My apologies for the rough writing and likely typos. It's not easy typing mostly one-handed with a fussy baby! Thanks for loving me through it! :)
Blessings.
I find myself again at the computer after a severe writing drought. I am certain there are too many things to say in a short amount of time as there is no guarantee how long this baby in my lap will be satisfied with her toy, and I'm likely to forget a bunch of stuff too. I am mostly driven to write now because Lucas is having a rough time and my mom encouraged me to share the news and get others on board to pray for him. This seems to be the most efficient way to do that.
This whole school year has been a bit off, I think. He began ok with a new teacher this year (who is wonderful and we love her and her team!!), but I think that having Evangeline has taken a huge toll on me and that has affected everything else. To sum up: After four sleepless nights of labor, she came in a bit of a whirlwind, all naturally after the other two were c-sections. I was beyond exhausted and haven't had much rest since. She had some feeding issues and I had be up most hours in the day to keep on a very regimented feeding schedule. She finally made it back to her birth weight at 6 weeks old (normal is by 2 weeks old). It did take me away from my family and even my own sanity quite a bit though. One (myself being that one) would think that with a third child things would be simple, clear, predictable, manageable, but no. Not in this case. My other two kids had no issues with eating. I didn't have to attempt to force feed anything. They didn't have to have the underside of their tongues lasered. Blah blah blah. She's doing great now, but I am still on the cusp of myself, just beginning to crawl out of the hole. Evangeline will be 6 months old on Friday. I never would have guessed it would be such a recovery. My sweet family, my sweet boy, they have been rather neglected I think.
I don't know how much that weighs in, but I am sure it accounts for something.
Anyway... More recently, Lucas got sick. He had a lot more seizures than normal at school then came home and vomited. Eliana had just been sick two days earlier, so I thought it could be related, but she didn't have a fever. Lucas did.I didn't actually see him vomit. I was bouncing a fussy baby and didn't hear him either. It is entirely possible that he vomited due to having a seizure. (That has happened several times.) Anyway, he ended up a mostly lethargic boy for about a week with temperatures ranging from 99-almost 104. When I brought him to see the pediatrician, he had already been sick 5 days. She gave him some antibiotics in hopes that it was just a bad bacterial infection in his adenoid gland which was swollen so that it looked like he might be harboring a tennis ball in his throat. After 3 days on the antibiotics, the fever was gone and he looked more like he had a ping pong ball in there. He was also staying awake more and acting much more like himself when awake.
Even though he was still sleeping a ton, we started sending him to school again.We sent him all last week. He finished the antibiotics Thursday. I know that they continue working for a while after the Rx is completed, so I wasn't super concerned that he wasn't entirely improved, but as he has continued to sleep around 20 hours a day, I called the doctor's office again. She ordered some blood work and a urinalysis. I am confident that he does not have a urinary tract infection (UTI), but understand the need to rule it out. She wants to check his basic blood panel and also to see if he might have some viral infection such as (this is the number one theory, I think) mono. We won't have the results for a few days, maybe not until early next week, but hopefully the answer will be there.
After we get those results, our next call is very well going to be to the neurologist. As Lucas came out of total lethargy, his seizures have been weird and not good. Being sick can increase/alter seizure activity, so I want to know about the sick first. He has demonstrated in the past 2 weeks at least three new seizure presentations atypical from his norm. He had already begun to have some grand mal seizures with generalized body jerking like most people imagine seizures to appear, but that he has never had before the past 3 months. Now, he is doing all kinds of funky things including seizing in his sleep which hasn't been an issue in the past. (He has them frequently as he is waking or sometimes as he is falling asleep, but not while he is asleep in the night.)
I am tempted to call Dr Altman now (the neurologist), but know that there isn't much to do until we get him healthy. We just increased his medications about 2 months ago since his seizures have increased in severity. I don't know that what is happening with his seizures now is due to his illness (whatever it is) or if it is something else, so we will wait it out a little longer and hopefully have some answers soon.
I need to get to Eliana's school now. My boy is still asleep after his 40+ seizures so far today (a normal day total is less than 30, usually less than 20) and my baby is screaming and especially grumpy and I hope not sick. Thank you all for praying I will try to update when I get his blood work results.
My apologies for the rough writing and likely typos. It's not easy typing mostly one-handed with a fussy baby! Thanks for loving me through it! :)
Blessings.
Monday, June 30, 2014
Post, Post-op (very post)
I would guess that you all assumed that Lucas made it out of surgery all right back in December since I never updated and we didn't get any freaked questioners here on the blog inquiring after him. There were a few posts on facebook, I think, about him coming out of surgery all right, so maybe everyone saw that. I don't know. I, obviously, am not much of an internetter. (I do, however, still enjoy adding my own additions to the English language. Who knows; someday, something might be mainstreamed. Last year's word of the year was "selfie". What a travesty is that!?!) I find myself here, awake earlier than desired with a household still asleep and I figured I could try an update.
I am certain there is much to say and I always feel a little bad writing so much for folks to read, but a dear friend encouraged me that she always takes the time to do so, even if she has to go back to it multiple times, so, this is for you, Katie. Thanks for the kindly words. :)
Lucas did indeed come out of surgery all right. He had all of his molars capped in stainless steel and no teeth pulled. :) As for urology: We ended up with a catheter again which we were not expecting. He had it in for about a week. I attempted to send him to school with it the following Monday (his surgery was on a Friday), but the place where it attached to his leg came unattached and I was not going to risk having that pulled out of him. (Yikes!) So, we stayed home and laid low. We even took our Christmas photo with his urine collection bag on the floor at his feet.
I am certain there is much to say and I always feel a little bad writing so much for folks to read, but a dear friend encouraged me that she always takes the time to do so, even if she has to go back to it multiple times, so, this is for you, Katie. Thanks for the kindly words. :)
Lucas did indeed come out of surgery all right. He had all of his molars capped in stainless steel and no teeth pulled. :) As for urology: We ended up with a catheter again which we were not expecting. He had it in for about a week. I attempted to send him to school with it the following Monday (his surgery was on a Friday), but the place where it attached to his leg came unattached and I was not going to risk having that pulled out of him. (Yikes!) So, we stayed home and laid low. We even took our Christmas photo with his urine collection bag on the floor at his feet.
Both of his post-op appointments went well and at the second appointment, we officially said our adieus to Dr. Austin. He has been such a fantastic doctor, all around. We look forward to running into him in the halls at Children's Hospital while there for other checkups or at the zoo or when out to eat. We are grateful that we do not have to pay to see him in his office anymore!
As we have done for the past few years, we spent Christmas in New York again with Marc's family. Before we left, we had a great Christmas gathering at our new house with my mom's side of the family. It is a new tradition hosting it here and I think it's great. I don't know that we took a single picture of the event, but I think we took a few photos in NY. I don't have them up yet, but at least I'm starting this, right?
January brought some severe morning sickness that lasted for over three months. February brought Zofran, anti-nausea medicine, that kept me from any further weight loss. We also saw Dr. Lueder in February, the opthalmologist, and were told that Lucas' astigmatism has improved dramatically. This is almost unheard of. We got him a new Rx and sometimes, he wears his glasses. Regardless, we were excited. :) The last weekend of February/first of March, Marc convinced me to leave our children and travel to California with him. I think that I mostly only agreed to this because I felt too terrible to argue, but I think it was good that we did it. I was still sick and we both ended up with colds on top of it, but we did have some good times too and got to visit our beloved friend Desiree who we miss terribly. :) I do have some pictures of that, but here ends the photo gallery display for this post. I have much, much more for you, but it will have to wait.
The biggest news from March (aside from my heaving stopping and appetite beginning to return) is that Lucas went away to camp, by himself! There is a camp in a tiny town in Missouri (Purdy) called Camp Barnabas. If any of you folks are Extreme Makeover Home Edition fans, you may have seen it on one the show's episodes. (Actually, I think it was a two show episode.) It is a camp for kids with special needs of all sorts. It isn't even limited to kids; ages go up to 35, I think. Mostly it's kids though. A woman from our church told us about it years ago. She has known the founders and has volunteered there many times herself. Children seven years old and over are invited to a week in the summer of amazing activities typical to a summer camp, but adjusted for folks with all kids of adjustments necessary. They swim, horseback ride, do a ropes course, have dance parties and campfires, sing silly songs, eat chili dogs and all sorts of other things. They have amazing staff which includes many many medical folk and they have a ton of fun. Camp Barnabas has added to the summer camp option, a weekend camp in the Spring and another in the fall. There aren't as many activities, as there isn't as much time, but they still cram plenty into the time they do have.
Lucas didn't turn seven until May, but Barnabas made an exception for him to be there so that we could test the waters a bit. (I was really struggling to wrap my head around leaving him for two nights in a new place with new people. Plus, I miss him like crazy when we're apart, even just in his school day. I know I'm a sap, but I am entirely ok with that.) Marc, Eliana and I stayed in Branson, MO for the weekend, about an hour and a half away from Purdy, so that we could be close enough if needed and wouldn't have to drive 12 hours Friday and again Sunday with there and back trips. We took Eliana to Silver Dollar City on their opening weekend and she rode her first roller coasters and was very brave about it. One of the nurses at Barnabas kept me in the regular loop with text messages and a couple of pictures which was not in her job description, but I am eternally grateful for her extra love and consideration for this mommy. :) I have opted to not send him to the full week this summer because the week that would be ideal for him is the week before school begins and only a week or two after school begins, DeSantis baby number three is coming. I decided I would rather have some time with my handsome Moose before sending him to school and having a baby. We will certainly be spending a lot of time in our pool here at home this summer and I hope he won't miss camp too much. We'll likely send him back for the fall "Barna-Break" though. When Eliana is seven, she will get to go to camp with him as they have a sibling program too. Amazing place, seriously. Amazing!
April brought our first family trip out West. We had a wedding in Arizona (Congrats again, Matt and Lisa!) and decided to turn it into a vacation. We have not traveled west, in part, because we didn't know how it would effect Lucas' seizures. They are so easily influenced by his sleep patterns and going to a time zone two hours earlier could have meant starting our days at 4:00-4:30am and ending at 6:00-6:30pm. We scheduled our flights so as to try to avoid this and Lucas was remarkable. He adjusted to the new time zone in a day and returning home did the same. While we were there, we got to visit with dear friends we miss, both briefly at the wedding and spent a little more time with some folks who have relocated there from Brooklyn. (We love you, Turrigianos, Hsus and Petrowskis!) We also got to see some of the amazing landscape there including the Grand Canyon. We took a ton of pictures, but have not even gone through them yet. There are so many. I will get them up for your viewing eventually though, hopefully soon. :)
May, we were out of town again for my baby brother Judah's wedding. His wife Rachel (who we adore!) is from Wisconsin and that is where they were married. It was a whirlwind weekend bookended with a lot of driving, but it was great. She was lovely and he had that classic dopey grin that I think every groom should have as he watches his beloved approach to join him. There was dancing and cookie dough and light sabers (two of which came home with us). We are so thrilled for them and thankful that they have decided to relocate from Chicago to St. Louis. We look forward to having them in more of our family photos. :)
June brought us a new neurosurgen and some out of towners for Eliana's fourth birthday and Fathers' Day. Dr. Leonard who had been with Lucas since birth, maybe even before, took a position as the Head of Neurosurgery and at a Children's Hospital in Iowa or Idaho or Ohio. (I know you are all very different, and I mean no offense. I just don't remember which it was. Sorry.) Lucas is now a patient of Dr. Matt Smyth (who has never seen Doctor Who and I advised not to bother with the Matt Smith episodes anyway. The show went totally downhill after Davies left as head writer). He seems very nice and has a good working relationship with Lucas' neurologist, Dr. Altman. Marc's parents came in from Brooklyn for a short, but wonderful weekend visit. This is the first year that we haven't made it back to NY yet. The combination of busy and being pregnant has kept us from making it there. We are grateful for their eager willingness to come to us and are looking forward to getting back there sometime after the baby is born to see others and meet Marc's sister's baby who is expected in about three weeks!
That brings us to today, the last day of June. We have checkup appointments for both of the kids today. I will get to see how close to 70 pounds Lucas really is, as that's what I've been telling folks he weighs. Things should be settling down some in July. I am excited to look in my planner and see so many blank, unscheduled days. I am hoping to mostly keep it that way. Life's been good, but I haven't sewn since before Christmas and I want to lounge in my pool with my littles and I like having no agenda. :)
There have been so many other things that I could share with y'all, (new gate trainer finally arriving, new stroller, seat and net swing too, field trips, Special Olympics, Baby and bridal showers, more weddings, more doctor appointments, fall and head busting open with trip to the ER, summer school, etcetera, etcetera) but Lucas is awake and I need to feed him breakfast.
I leave you with this thought: In addition to all of the above, we have also had some deaths recently. A couple of them have been a bit shocking, a couple not as surprising, but all have caused me to keep the consideration of the temporary-ness of this life in the forefront of my mind. Anything could happen at anytime. A bee sting and unknown allergy (Kathy), a car accident (Dave), a poor recovery from surgery (Joe), a slow struggle (Lorraine, Gene), an unknown festering infection (Jan) and there are others. It's been four years since my friend Dan drowned, a good swimmer. Longer since my friend Ray, on the cusp of a bone marrow transplant, got pneumonia and that was it. Stuff happens. What are you doing in the mean time? Who or what are you serving? What do you value - not what do you say you value, but what does your life show that you value? "Where your treasure is, that's where your heart is." So where is it really? Do you know that Someone made you, on purpose, with purpose? Someone loves you even if you don't want Him to love you, even if you reject Him. There are tough questions that challenge us all, but there is an Answer. Don't wait until the end to get right. Get Right Now and live right. It isn't always easy, but it is always worth it.
You all remain in my prayers.
Thursday, December 12, 2013
Surgery Tomorrow!
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!
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!
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!
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