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!
Tuesday, May 28, 2013
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!
Saturday, December 29, 2012
Oy Vey!
So much has happened in our lives, and I'm sure yours, since July. I am certain there is much to say, but I will try not to overwhelm all you lovelies who love us with a forever long post. (I'm sure with such sudden rambles I am instilling great confidence in you already...) All right, you might be in for it. Get comfy now while I try to break it down.
August began with the purchase of a new house, new to us anyway. It is a lovely home not far from our current home (yes, we are still in the "regular house" as Eliana calls it and have yet to move into the "new house"). After about 3 1/2 years of looking, we finally found pretty much everything we wanted. It is a solid brick ranch with a walk-out basement and an in-ground pool. It has three bedrooms upstairs and one in the basement, two fireplaces upstairs and one in the basement and is about double the size of our current home. It is in a small neighborhood made up of neighbors who love to be neighbors and have three parties a year just to enjoy each other. The house belonged to a friend at our church who lived there from the house's beginning and actually designed it himself. He kept it in excellent condition, though not in our taste. We have been working since August removing wall paper and flooring (mostly carpet), knocking down a half wall and deck, painting, laying hardwood, et cetera. et cetera. We are hoping to be in the new house mid-late January. The next big project is the kitchen and a slightly smaller project, the hall bath. The bedrooms, living room, entryway and dining room are all finished save some base molding. You can see a few pics below. We'll put up new ones of the finished product when it's finished. :)
The house is a big deal, no doubt, but I'm not sure it is a bigger deal than Lucas beginning Kindergarten. He started in mid-August and he loves it. He has a new teacher, fresh from school. Miss Ann is her name and she's fantastic. She is everything we would ask to have in a teacher/care giver for Lucas except that she hasn't had much experience, but her enthusiasm to learn and ability to take everything in stride and with a smile leave us not wanting for anything. There are others around to lend a hand or word of advice and it doesn't seem to matter that she hasn't walked so many things herself; she's walking it now and she's walking it in style. :) (We love you, Miss Ann!!) Miss Ann has two assistants, Ms. Elizabeth (or Ms Liz) and Ms. Barb. They are great too. Actually, everyone has been great. Lucas is at a St. Louis County Special School District school, meaning everyone in the school is a Special Ed kiddo. I love that we walk through the halls and people I don't know, know Lucas. Everyone is caring and excited to be with the kids. From principals to nurses to art and PE and Music and Therapists and everyone else, we love it. Thank you all, Ackerman staff. You are amazing!
I am hoping that by the end of the school year Lucas will be walking regularly and feeding himself. I don't know how close to achieving these goals we are, but we are working on it. When school first started, he was super stressed, trying to stay awake and participate in everything. He was loving it, but it was pretty hard on him. He ended up with a blister on his chin that he almost immediately popped from rubbing his knuckles on his chin. He also had a ton of seizures. Going suddenly into a new routine of 6 1/2 hour school days, five days a week was rough. He was having a ton of seizures, over 100 many days. I figured it would take some time to adjust to the new routine, but I was hoping it wouldn't be so bad as it was. He would push himself to stay awake all day and then get in the car after school and scream all the way home and often after we got home for a while too. He was passing out super early and waking super early and both he and I were moving into the manic zone, with cliffs we could descend into utter darkness at any moment. I had just enough manic in me to keep me going without nearly enough sleep, but I was exhausted enough that I was still able to sleep when I had the opportunity. Lucas was manic enough to make it through school every day with out sleeping, in spite of countless seizures, but began spreading his screaming tendencies to every car ride. Eliana learned to fall asleep to his high ptched wailing and Marc thanked God that he didn't have to be in the car with us that often.
Also in August, we had our appointment with Dr. Rohrbaugh, the doctor who worked in the same office as Dr. Burris. He was kind and had some good input for us, but overall, I don't feel confident that we had the best communication. I don't know that he heard me or that I heard him very well. I could just be yearning for another Dr. Burris (which I will readily admit), but he didn't quite fit into what I wanted to find. I was feeling particularly desperate with the anxiety Lucas was having since beginning school. Dr Rohrbaugh did suggest beginning giving Lucas magnesium to help soothe his anxious temperament, which also has helped with his constipation issues. Win-win. :)
September was mostly full of wallpaper removal and mudding and sanding and painting. The most exciting thing was our first Special Olympics event. Special School District does a lot of Special Olympic events. Our first was a T-ball game. It was a beautiful day and we took plenty of pictures. Lucas was slowly adjusting more to school hours and started falling asleep -occasionally- at school. He continued screaming in the car.
October began with the building of a new deck on the new house which turned out gorgeously. Mid -month we had an appointment with Dr. Altman, a neurologist out of St John's Mercy, a closer drive for us which is nice. I felt more comfortable with Dr Altman than Dr. Rohrbaugh. I felt like there was more ease of communication. This is nothing against Dr Rohrbaugh. It could have more to do with my mental and emotional state than anything else and I felt like Dr Altman cradled me a bit more. After beginning school, we had a couple of our worst days ever, 300 plus seizures. I was pretty frazzled. Leaving Lucas in the care of new people, capable people, but as yet unfamiliar with all of Lucas' little quirks and twitches and seizures, was a great added stress for me. His pushing himself to stay awake was reeking no little havoc. I felt I needed someone who I felt was with me and I felt like Dr. Altman was willing. We have been giving Lucas Felbatol for nearly 3 years now. We have never thought that it offered much improvement. We have wanted to take him off it for a long time. We stayed on it to have it as a baseline drug as we tried other things. Felbatol has a few unfavorable side effects, like liver failure, while Keppra has none. Since he's on Keppra, let's drop the Felbatol, right? Dr. Rohrbaugh wanted to increase the Felbatol at night to see if it would help. We didn't. Dr. Altman said we could drop the Felbatol and try something else. That probably weighed heavily on our decision to stick with Dr Altman too. Dr. Altman suggested trying ONFI. Lucas took this drug back when he was around a year old. We got it from Canada because they didn't make it in the States yet. His seizures increased and the limited beginnings of speech that he had ("mama"and "dada" and some other sounds), disappeared. We were very frustrated with it at the time. He has not had any speech return since then. Now, however, we figure we can try again. Perhaps it will inspire the opposite and his seizures will drop and he will begin to make strides in speech. ???
October also saw some Special Olympics bowling and Soccer (which was a huge event!) and a field trip to the pumpkin patch. We had a visit from Marc's sister Michele and Hubby Dave and sweet baby Darla. (We, apparently, took no pictures this visit though. You'll just have to take my word for it that the kids were super cute and we had a great time!) Lucas and Eliana were both sick, her with a respitory infection and him with a urinary tract infection (UTI). I think that he has had this UTI for months because his pee has been stinking, but he hasn't had any other symptoms until he had some purple pee in his diaper. (Yeah, purple. I'd never seen that before. Like watered down grape Kool Aid.) She got better. He got better until...
November his pee started stinking again. It still stinks. I think in the new year, we are going to have to check in with the urologist. He's done two rounds of antibiotics. No more purple pee though. :)
Lucas has been much more well adjusted to school since November. He is sleeping better and keeping a more regular schedule. He typically goes back to sleep for a while in the morning before school. His seizures have changed since school started. He was having smaller, easy to miss seizures a lot. The kind that add up to 100+ pretty easily. They have been moving into more obvious ones, bigger, harder, more likely to make him sleep after having one. This means that numbers have dropped significantly, but severity has increased. I think I would rather have these than hundreds of tiny ones though. Actually, to be more specific, I would rather not have any.
Thanksgiving we drove down to Farmington, MO for a feast with my mom's family. Lucas was screaming, as usual. It's almost two hours there and two hours back. That's a lot of screaming. I sat in between the kids in the back to try to help soothe our sweet boy. With a yogurt assist, he calmed down and we have not had such terrible car rides since, Praise the Lord!! He will still fuss and occasionally scream, but not constantly, not without end. Yeah!! I also made the turkey again this year adn it was delicious, though not spicy like we want it to be. I think next year we'll cook a habenero in some white wine and then add that to the wine and lemon and salt and blackened seasoning I inject into the bird to get the heat all over, not just in the rub. Yummy!
December has come with ordering a new couch and two recliners for the new house, a fitting for new DAFO's for Lucas (foot braces), a vomitting seizure, installing an island in the kitchen, getting a new dishwasher and cooktop, having some gas and electric run in the new house and a quick visit from my brother Gabe and his girlfriend Sarah who live in Chicago.
We also had another appointment with Dr. Altman. It took a while to see him again because we had to wait for Lucas' records to be transferred and allow Dr. Altman the time to go through them. (He's got a pretty extensive file for such a young guy.) We have been weening him off the Felbatol and should be finished with that in the next week and a half. We started him on the ONFI (clobazam). He's been on it less than a week and we have more increasing to do. Nothing major to report there, yet. Also, we spoke again with Dr. R from the epilepsy center at Children's hospital. We were supposed to have an appointment with her, but I cancelled it because we were still in a state of transition. It was before we saw Dr. Altman again. She said that she has been in touch with a couple of research groups about Lucas. We are persuing one, in the Northwest. It's Dr. Dobyns' group. He is pretty much the top guy in brain-formed-weird stuff. A Dr. Hannah Tully is the one in his group who is going to be looking at Lucas. We will be sending a blood sample and his brain imaging to her. It is unlikely that anything will change in Lucas' treatment, but if they come up with something that might offer answers to another family in the future, we would be delighted. One thing that she suggested was that some of his brain malformations may be due to his hydrocephalus. Some things like the peninsula that he has in the middle of his brain may be due to the pressure of the fluid pushing the brain matter into that position. Dr. R also had Dr. Bob McKinstry, the top neuroradiologist at Children's hospital, look at Lucas' MRI. He was not around for Lucas' first analysis when the Drs were so confused and uncertain what to tell us. I don't know that we have anything new to share, but we are looking forward to continuing in relationship with both Dr R and Dr. Tully.
One last bit of fun news. Lucas was just in the Ackerman School winter production of the Return of the Grinch. It was amazing. Everyone did an amazing job. All the kids participated and Lucas was fantastic, He was The Honorable Lucas VonWho, Mayor of Whoville. We video taped the whole show and have watched it twice already. We will be putting at least some of it on youtube. I'll let you know when that happens, without such a long blah blah blah. :)
I have gone on for ages now. All I have left to say is Merry Christmas and happy new year. This year has been filled with lots of struggles for lots of people. I pray that as we face what is to come, we face it with a grateful heart and knowing and trusting God, no matter what. I thank God for all of you, for my beloved husband, our amazing children and the grace and faithfulness and love of God, His freedom in and through our lives and His desire that we know Him and have rest adn peace in Him, always.
August began with the purchase of a new house, new to us anyway. It is a lovely home not far from our current home (yes, we are still in the "regular house" as Eliana calls it and have yet to move into the "new house"). After about 3 1/2 years of looking, we finally found pretty much everything we wanted. It is a solid brick ranch with a walk-out basement and an in-ground pool. It has three bedrooms upstairs and one in the basement, two fireplaces upstairs and one in the basement and is about double the size of our current home. It is in a small neighborhood made up of neighbors who love to be neighbors and have three parties a year just to enjoy each other. The house belonged to a friend at our church who lived there from the house's beginning and actually designed it himself. He kept it in excellent condition, though not in our taste. We have been working since August removing wall paper and flooring (mostly carpet), knocking down a half wall and deck, painting, laying hardwood, et cetera. et cetera. We are hoping to be in the new house mid-late January. The next big project is the kitchen and a slightly smaller project, the hall bath. The bedrooms, living room, entryway and dining room are all finished save some base molding. You can see a few pics below. We'll put up new ones of the finished product when it's finished. :)
The house is a big deal, no doubt, but I'm not sure it is a bigger deal than Lucas beginning Kindergarten. He started in mid-August and he loves it. He has a new teacher, fresh from school. Miss Ann is her name and she's fantastic. She is everything we would ask to have in a teacher/care giver for Lucas except that she hasn't had much experience, but her enthusiasm to learn and ability to take everything in stride and with a smile leave us not wanting for anything. There are others around to lend a hand or word of advice and it doesn't seem to matter that she hasn't walked so many things herself; she's walking it now and she's walking it in style. :) (We love you, Miss Ann!!) Miss Ann has two assistants, Ms. Elizabeth (or Ms Liz) and Ms. Barb. They are great too. Actually, everyone has been great. Lucas is at a St. Louis County Special School District school, meaning everyone in the school is a Special Ed kiddo. I love that we walk through the halls and people I don't know, know Lucas. Everyone is caring and excited to be with the kids. From principals to nurses to art and PE and Music and Therapists and everyone else, we love it. Thank you all, Ackerman staff. You are amazing!
I am hoping that by the end of the school year Lucas will be walking regularly and feeding himself. I don't know how close to achieving these goals we are, but we are working on it. When school first started, he was super stressed, trying to stay awake and participate in everything. He was loving it, but it was pretty hard on him. He ended up with a blister on his chin that he almost immediately popped from rubbing his knuckles on his chin. He also had a ton of seizures. Going suddenly into a new routine of 6 1/2 hour school days, five days a week was rough. He was having a ton of seizures, over 100 many days. I figured it would take some time to adjust to the new routine, but I was hoping it wouldn't be so bad as it was. He would push himself to stay awake all day and then get in the car after school and scream all the way home and often after we got home for a while too. He was passing out super early and waking super early and both he and I were moving into the manic zone, with cliffs we could descend into utter darkness at any moment. I had just enough manic in me to keep me going without nearly enough sleep, but I was exhausted enough that I was still able to sleep when I had the opportunity. Lucas was manic enough to make it through school every day with out sleeping, in spite of countless seizures, but began spreading his screaming tendencies to every car ride. Eliana learned to fall asleep to his high ptched wailing and Marc thanked God that he didn't have to be in the car with us that often.
Also in August, we had our appointment with Dr. Rohrbaugh, the doctor who worked in the same office as Dr. Burris. He was kind and had some good input for us, but overall, I don't feel confident that we had the best communication. I don't know that he heard me or that I heard him very well. I could just be yearning for another Dr. Burris (which I will readily admit), but he didn't quite fit into what I wanted to find. I was feeling particularly desperate with the anxiety Lucas was having since beginning school. Dr Rohrbaugh did suggest beginning giving Lucas magnesium to help soothe his anxious temperament, which also has helped with his constipation issues. Win-win. :)
September was mostly full of wallpaper removal and mudding and sanding and painting. The most exciting thing was our first Special Olympics event. Special School District does a lot of Special Olympic events. Our first was a T-ball game. It was a beautiful day and we took plenty of pictures. Lucas was slowly adjusting more to school hours and started falling asleep -occasionally- at school. He continued screaming in the car.
October began with the building of a new deck on the new house which turned out gorgeously. Mid -month we had an appointment with Dr. Altman, a neurologist out of St John's Mercy, a closer drive for us which is nice. I felt more comfortable with Dr Altman than Dr. Rohrbaugh. I felt like there was more ease of communication. This is nothing against Dr Rohrbaugh. It could have more to do with my mental and emotional state than anything else and I felt like Dr Altman cradled me a bit more. After beginning school, we had a couple of our worst days ever, 300 plus seizures. I was pretty frazzled. Leaving Lucas in the care of new people, capable people, but as yet unfamiliar with all of Lucas' little quirks and twitches and seizures, was a great added stress for me. His pushing himself to stay awake was reeking no little havoc. I felt I needed someone who I felt was with me and I felt like Dr. Altman was willing. We have been giving Lucas Felbatol for nearly 3 years now. We have never thought that it offered much improvement. We have wanted to take him off it for a long time. We stayed on it to have it as a baseline drug as we tried other things. Felbatol has a few unfavorable side effects, like liver failure, while Keppra has none. Since he's on Keppra, let's drop the Felbatol, right? Dr. Rohrbaugh wanted to increase the Felbatol at night to see if it would help. We didn't. Dr. Altman said we could drop the Felbatol and try something else. That probably weighed heavily on our decision to stick with Dr Altman too. Dr. Altman suggested trying ONFI. Lucas took this drug back when he was around a year old. We got it from Canada because they didn't make it in the States yet. His seizures increased and the limited beginnings of speech that he had ("mama"and "dada" and some other sounds), disappeared. We were very frustrated with it at the time. He has not had any speech return since then. Now, however, we figure we can try again. Perhaps it will inspire the opposite and his seizures will drop and he will begin to make strides in speech. ???
October also saw some Special Olympics bowling and Soccer (which was a huge event!) and a field trip to the pumpkin patch. We had a visit from Marc's sister Michele and Hubby Dave and sweet baby Darla. (We, apparently, took no pictures this visit though. You'll just have to take my word for it that the kids were super cute and we had a great time!) Lucas and Eliana were both sick, her with a respitory infection and him with a urinary tract infection (UTI). I think that he has had this UTI for months because his pee has been stinking, but he hasn't had any other symptoms until he had some purple pee in his diaper. (Yeah, purple. I'd never seen that before. Like watered down grape Kool Aid.) She got better. He got better until...
November his pee started stinking again. It still stinks. I think in the new year, we are going to have to check in with the urologist. He's done two rounds of antibiotics. No more purple pee though. :)
Lucas has been much more well adjusted to school since November. He is sleeping better and keeping a more regular schedule. He typically goes back to sleep for a while in the morning before school. His seizures have changed since school started. He was having smaller, easy to miss seizures a lot. The kind that add up to 100+ pretty easily. They have been moving into more obvious ones, bigger, harder, more likely to make him sleep after having one. This means that numbers have dropped significantly, but severity has increased. I think I would rather have these than hundreds of tiny ones though. Actually, to be more specific, I would rather not have any.
Thanksgiving we drove down to Farmington, MO for a feast with my mom's family. Lucas was screaming, as usual. It's almost two hours there and two hours back. That's a lot of screaming. I sat in between the kids in the back to try to help soothe our sweet boy. With a yogurt assist, he calmed down and we have not had such terrible car rides since, Praise the Lord!! He will still fuss and occasionally scream, but not constantly, not without end. Yeah!! I also made the turkey again this year adn it was delicious, though not spicy like we want it to be. I think next year we'll cook a habenero in some white wine and then add that to the wine and lemon and salt and blackened seasoning I inject into the bird to get the heat all over, not just in the rub. Yummy!
December has come with ordering a new couch and two recliners for the new house, a fitting for new DAFO's for Lucas (foot braces), a vomitting seizure, installing an island in the kitchen, getting a new dishwasher and cooktop, having some gas and electric run in the new house and a quick visit from my brother Gabe and his girlfriend Sarah who live in Chicago.
We also had another appointment with Dr. Altman. It took a while to see him again because we had to wait for Lucas' records to be transferred and allow Dr. Altman the time to go through them. (He's got a pretty extensive file for such a young guy.) We have been weening him off the Felbatol and should be finished with that in the next week and a half. We started him on the ONFI (clobazam). He's been on it less than a week and we have more increasing to do. Nothing major to report there, yet. Also, we spoke again with Dr. R from the epilepsy center at Children's hospital. We were supposed to have an appointment with her, but I cancelled it because we were still in a state of transition. It was before we saw Dr. Altman again. She said that she has been in touch with a couple of research groups about Lucas. We are persuing one, in the Northwest. It's Dr. Dobyns' group. He is pretty much the top guy in brain-formed-weird stuff. A Dr. Hannah Tully is the one in his group who is going to be looking at Lucas. We will be sending a blood sample and his brain imaging to her. It is unlikely that anything will change in Lucas' treatment, but if they come up with something that might offer answers to another family in the future, we would be delighted. One thing that she suggested was that some of his brain malformations may be due to his hydrocephalus. Some things like the peninsula that he has in the middle of his brain may be due to the pressure of the fluid pushing the brain matter into that position. Dr. R also had Dr. Bob McKinstry, the top neuroradiologist at Children's hospital, look at Lucas' MRI. He was not around for Lucas' first analysis when the Drs were so confused and uncertain what to tell us. I don't know that we have anything new to share, but we are looking forward to continuing in relationship with both Dr R and Dr. Tully.
One last bit of fun news. Lucas was just in the Ackerman School winter production of the Return of the Grinch. It was amazing. Everyone did an amazing job. All the kids participated and Lucas was fantastic, He was The Honorable Lucas VonWho, Mayor of Whoville. We video taped the whole show and have watched it twice already. We will be putting at least some of it on youtube. I'll let you know when that happens, without such a long blah blah blah. :)
I have gone on for ages now. All I have left to say is Merry Christmas and happy new year. This year has been filled with lots of struggles for lots of people. I pray that as we face what is to come, we face it with a grateful heart and knowing and trusting God, no matter what. I thank God for all of you, for my beloved husband, our amazing children and the grace and faithfulness and love of God, His freedom in and through our lives and His desire that we know Him and have rest adn peace in Him, always.
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| Our new house |
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| Fall 2012 |
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| Special Olympics Soccer 2012 |
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| Pumpkin Patch 2012 |
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| Special Olympics Volleyball 2012 |
Thursday, July 5, 2012
I'm so not good at this...
Months later, once again, I finally get around to this. Thanks to all who still care to check in on us. I know that I leave a lot out only getting updates to you every few months. Hopefully, some of the pictures will fill in some blanks.
Let's see... Where to begin...
We are now up to 7mL twice a day on the Keppra. The goal dose is 8mL twice a day. We stayed at 6mL in the morning and 7mL at night for a while. At 6mL twice a day, I was feeling confident about improving seizure activity, but when we increased his evening dose to 7mL, he started having more seizures, more clusters and getting more Klonopin. It wasn't as bad as a few months back with numbers over 100, but we had gotten down to between 15-25 sz most days and we were hopping up to 50's or more with clusters of 10-30. I finally increased his morning dose to 7mL also and after a few days, it seems the numbers are dropping again, thank God! He has been more sleepy and irritable, but we are hoping that his body will acclimate and that will subside.
We will be seeing his new neurologist in about a month. Dr. Rohrbaugh is one of the doctors in the same practice as Dr. Burris, who we love so much and will miss for sure. I am hopeful and confident that he will be great for Lucas and for us. He has the same philosophies as Dr. Burris and we are looking forward to getting to know him better. We will still follow up with Dr. R at Children's Hospital, but not as often. We will just keep her as a consulting doc.
In more personal matters, we have recently made some new friends. :) One of the many malformations of Lucas' fascinating brain is called polymicrogyria (PMG). It is the likely culprit behind his seizures. Thanks to social networking, we have met some other families in the St. Louis area with a child who also has PMG. We all met up at a park a few weeks ago. It was wonderful. I always thank God for those special times when I meet new people who feel immediately like dear old friends. I would (and likely will still for a while) forget some names and mix up who is married to who and whose kids those might be, but being together, meeting for the first time, was like we'd done it before a thousand times. All our kids are different and we all have other kids who are "normally developed", but it was like, even though our paths have not been the same, that we have been walking together all along. We are excitedly thankful that we now will be sharing our walks together. We live a bit all over, but we will be getting together many more times. :)
Lucas and Eliana have also both had birthdays. He is now the big 5 and she is 2. He is around the 30% for his weight, but the 86% for his height. We are super thankful for his thinness though. If he were a stocky boy, I'm sure he'd have at least 15 more pounds on him. :) We visited family in NY for his birthday and got to meet our newest family addition, Baby Darla. She was born just less than two weeks before Lucas' birthday and she's beautiful. Lucas and Eliana each spent a day sick on our short visit, so we didn't get as much time with her as we would have liked, but we are looking forward to seeing more of her in a few months. :)
Lucas also had his last day of preschool and will be starting kindergarten the 13th of August. I remain to be about equally thrilled and nervous. I'm sure he will be fine. Actually, I'm confident he will thrive, but I am going to miss him and I have a lot of things racing through my mind I want settled before I really trust him to be in someone else' care for so long. I'm sure I've mentioned before that this will be the longest separation aside from when Eliana was born. He'll be there 9-3:30. I'm sure I'll cry. His last day of preschool was filled with tears for me too. We are eternally thankful for his most amazing team in preschool. We will miss them a ton, Julie, Susan, Sue, Rekha, Linda, Laura and Laura.
We have a bunch of photos for your viewing pleasure. There are a few more on the camera. We'll get those to you eventually. We also still have videos, mostly of Eliana being adorable and often ridiculous. I know I keep saying that.
For now, it's time to get the kids ready to go to the dentist (yeah! fun!). I hope you all have a wonderful day and see the wonder and love of God all around you. :)
Until next time...
Let's see... Where to begin...
We are now up to 7mL twice a day on the Keppra. The goal dose is 8mL twice a day. We stayed at 6mL in the morning and 7mL at night for a while. At 6mL twice a day, I was feeling confident about improving seizure activity, but when we increased his evening dose to 7mL, he started having more seizures, more clusters and getting more Klonopin. It wasn't as bad as a few months back with numbers over 100, but we had gotten down to between 15-25 sz most days and we were hopping up to 50's or more with clusters of 10-30. I finally increased his morning dose to 7mL also and after a few days, it seems the numbers are dropping again, thank God! He has been more sleepy and irritable, but we are hoping that his body will acclimate and that will subside.
We will be seeing his new neurologist in about a month. Dr. Rohrbaugh is one of the doctors in the same practice as Dr. Burris, who we love so much and will miss for sure. I am hopeful and confident that he will be great for Lucas and for us. He has the same philosophies as Dr. Burris and we are looking forward to getting to know him better. We will still follow up with Dr. R at Children's Hospital, but not as often. We will just keep her as a consulting doc.
In more personal matters, we have recently made some new friends. :) One of the many malformations of Lucas' fascinating brain is called polymicrogyria (PMG). It is the likely culprit behind his seizures. Thanks to social networking, we have met some other families in the St. Louis area with a child who also has PMG. We all met up at a park a few weeks ago. It was wonderful. I always thank God for those special times when I meet new people who feel immediately like dear old friends. I would (and likely will still for a while) forget some names and mix up who is married to who and whose kids those might be, but being together, meeting for the first time, was like we'd done it before a thousand times. All our kids are different and we all have other kids who are "normally developed", but it was like, even though our paths have not been the same, that we have been walking together all along. We are excitedly thankful that we now will be sharing our walks together. We live a bit all over, but we will be getting together many more times. :)
Lucas and Eliana have also both had birthdays. He is now the big 5 and she is 2. He is around the 30% for his weight, but the 86% for his height. We are super thankful for his thinness though. If he were a stocky boy, I'm sure he'd have at least 15 more pounds on him. :) We visited family in NY for his birthday and got to meet our newest family addition, Baby Darla. She was born just less than two weeks before Lucas' birthday and she's beautiful. Lucas and Eliana each spent a day sick on our short visit, so we didn't get as much time with her as we would have liked, but we are looking forward to seeing more of her in a few months. :)
Lucas also had his last day of preschool and will be starting kindergarten the 13th of August. I remain to be about equally thrilled and nervous. I'm sure he will be fine. Actually, I'm confident he will thrive, but I am going to miss him and I have a lot of things racing through my mind I want settled before I really trust him to be in someone else' care for so long. I'm sure I've mentioned before that this will be the longest separation aside from when Eliana was born. He'll be there 9-3:30. I'm sure I'll cry. His last day of preschool was filled with tears for me too. We are eternally thankful for his most amazing team in preschool. We will miss them a ton, Julie, Susan, Sue, Rekha, Linda, Laura and Laura.
We have a bunch of photos for your viewing pleasure. There are a few more on the camera. We'll get those to you eventually. We also still have videos, mostly of Eliana being adorable and often ridiculous. I know I keep saying that.
For now, it's time to get the kids ready to go to the dentist (yeah! fun!). I hope you all have a wonderful day and see the wonder and love of God all around you. :)
Until next time...
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| Spring in St. Louis |
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| NYC May 2012 |
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| June 2012 |
Thursday, May 3, 2012
MRI down and a few pics
Hello again, Friends.
Not too much to say today. (Not that I couldn't babble on, as anyone who knows me can attest.) I just wanted to let you know that we had Lucas' MRI this past Friday (nearly a week ago now). My dad came to help with Eliana so that both Marc and I could be with him in recovery. Everything went smoothly as far as the procedure goes. He did have 100+ seizures that day though. We had to wake him to get to the hospital and then had to wake him again in recovery to prove to the staff that he was all right. Any time his sleep is disturbed the seizure count goes up. Also, after about three months of trying to get him pooping regularly and finally having success, we are back to Miralax and have only had two poop days since Friday. He's not had the best week at school either. He's been somewhat grumpy, uninterested and very sleepy. We're not sure why this is, but we'll keep pressing on and expect next week to be better. :)
As for the results of the MRI, the neuroradiologists at StL Children's hospital are saying pretty much the exact same things they said after his last MRI when he was three months old. They are saying that he has holoprosencephaly (HPE). The last time we went through this, those of you who have been following this mess for the past five years might remember, we sent a copy of his MRI to The Carter's Center- a group based at Stanford in California that works only with HPE cases. They told us that Lucas does NOT in fact have HPE. They gave us a list of different malformations they could see, but said that it is not HPE. The language they are using in this report is the same as that which they used on the last one stating that it is within the "spectrum" of HPE suggesting they are not firm on the diagnosis. The new Neurologist, Dr. R (who has yet to convince me that she's the doc for us), said that she will speak with those in radiology to see how confident they are in what they wrote. Regardless of what they say, we are going to see if those at the Carter Center will take another look and offer their opinions. We have a great deal of confidence in what they say, not only because they are experts in the field, but also because they are experts in the field of neurology in general, the guys who write the books. :) None of this changes our course of treatment for Lucas, so overall, I guess it doesn't really matter. We are continuing to increase the Keppra. Over all, it seems we are having a decrease as most days are about 20-30 seizures. We are looking forward to getting and keeping them down further. :)
I feel like I had something else to say, but Eliana just threw her yogurt soaked bibs on the floor, so I should get and clean up the mess. We have a few pictures to share and hope you enjoy them. Oh! I remember what I was going to say! We are buying a house! Last summer the kids and I went swimming with a friend at the house of a man who attends the same church as we do. I only went into the basement to change a diaper, but told Les, the owner, that we have been looking for a ranch like his with a pool and if he ever wanted to sell to let us know. Six months later, the house was up for sale. We close on it on August first! There are a lot of changes and updates that we want to make, some for Lucas, like changing carpet to hardwood and some our cosmetic preferences like getting rid of all the wallpaper. :) We won't be moving in to the house for a few months after we buy, but we will be using the (heated) pool into the early fall! We are growing in excitement with each passing day and will surely show some pics as we progress. :) I think that's it for now. Blessings to you all. Thanks again for sticking with us. God is good even in the struggle and exhaustion and pain. He Is Good. :) Love to you all!
As for the results of the MRI, the neuroradiologists at StL Children's hospital are saying pretty much the exact same things they said after his last MRI when he was three months old. They are saying that he has holoprosencephaly (HPE). The last time we went through this, those of you who have been following this mess for the past five years might remember, we sent a copy of his MRI to The Carter's Center- a group based at Stanford in California that works only with HPE cases. They told us that Lucas does NOT in fact have HPE. They gave us a list of different malformations they could see, but said that it is not HPE. The language they are using in this report is the same as that which they used on the last one stating that it is within the "spectrum" of HPE suggesting they are not firm on the diagnosis. The new Neurologist, Dr. R (who has yet to convince me that she's the doc for us), said that she will speak with those in radiology to see how confident they are in what they wrote. Regardless of what they say, we are going to see if those at the Carter Center will take another look and offer their opinions. We have a great deal of confidence in what they say, not only because they are experts in the field, but also because they are experts in the field of neurology in general, the guys who write the books. :) None of this changes our course of treatment for Lucas, so overall, I guess it doesn't really matter. We are continuing to increase the Keppra. Over all, it seems we are having a decrease as most days are about 20-30 seizures. We are looking forward to getting and keeping them down further. :)
I feel like I had something else to say, but Eliana just threw her yogurt soaked bibs on the floor, so I should get and clean up the mess. We have a few pictures to share and hope you enjoy them. Oh! I remember what I was going to say! We are buying a house! Last summer the kids and I went swimming with a friend at the house of a man who attends the same church as we do. I only went into the basement to change a diaper, but told Les, the owner, that we have been looking for a ranch like his with a pool and if he ever wanted to sell to let us know. Six months later, the house was up for sale. We close on it on August first! There are a lot of changes and updates that we want to make, some for Lucas, like changing carpet to hardwood and some our cosmetic preferences like getting rid of all the wallpaper. :) We won't be moving in to the house for a few months after we buy, but we will be using the (heated) pool into the early fall! We are growing in excitement with each passing day and will surely show some pics as we progress. :) I think that's it for now. Blessings to you all. Thanks again for sticking with us. God is good even in the struggle and exhaustion and pain. He Is Good. :) Love to you all!
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| Spring in St. Louis |
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