Saturday, January 30, 2016

A Fat Lot of Good Intentions

Life continues to sweep me away with it and I continue to not update this blog. I'll try to throw out another six months worth of life now, likely scattered, much out of order and missing large chunks. ;)
We were told last year that the CBD oil would be available "in the fall". It wasn't. We then heard "by the end of the year". It wasn't. Next we were told January. That didn't happen either. The latest is that "production should be beginning in February". As far as when the end product will be available, we don't know. My guess is March, at least. It is a little frustrating, but I'd guess we aren't as frustrated as the two local suppliers who are trying to get on their feet. They have to jump through a lot of flaming hoops and they are working hard on doing so. We will wait and, in the mean time, we are trying other things.

We have seen the seizures (sz) grow in severity over the past several months. When we switched to Dr Goretzke (Dr G), we tried increasing the ONFI, but it didn't help, so we dropped him back down to his previous dose. Our next medication attempt was adding Depakote to his other medication repertoire. It didn't seem to help much either and with possible side effects such as sudden liver failure, we weened off that one. Without knowing how long we'll have to wait for the CBD (and there is nothing that says it will help either, though there is some evidence that it might), Dr. G suggested we consult with an epileptologist. Dr. G is a general neurologist whose practice covers a multitude of neurological issues. He thought it might be beneficial to speak with someone who just works with seizures. We met with Dr Fenton early last week.

After going through a brief history, we began to talk options. We settled on one med and then realized it is a sulfa based med and Lucas is allergic to sulfa. We then took a few more minutes and Dr Fenton suggested another med, one, surprisingly, we've never tried. It is related to Tegretol which Lucas took many years ago. This one is called Trileptal. We began it last Thursday night and then increased it to a morning and bedtime dose as of last Saturday. He's only been taking it for a week and he is at only one fourth of the dose Dr Fenton would like to reach based on his size, but we have already begun to see improvements. The sz seem to be decreasing in both frequency and severity! Until last night, I was beginning to get a little hopeful. Marc and I have been talking about possible vacations for the kids spring break. I wasn't so concerned about the wait for the CBD, because this seemed to be helping.

Getting Lucas into pajamas last night, I noticed a slight pinpoint rash on his torso. My heart sank a little, but I thought it might possibly be related to his wearing a new Benik vest, a tight-fitting vest with metal supports in the back to encourage his correct posture. (We got this after meeting with Dr Anderson, the orthopedic doc, in late November. We were concerned about Lucas developing scoliosis. He does not have actual scoliosis, but does have postural scoliosis and slight kyphosis. Dr Anderson felt confident that we could correct both with the Benik brace.) I thought that the rash might simply be a heat rash. This morning, however, it has spread from torso up his neck, and down onto his arms, hands, legs and feet. This is not a heat rash. We will be stopping the Trileptal. Monday, I will call Dr Fenton and figure what to do from here.

I cannot deny my heart has dipped a few feet below the surface of the water. I always am hesitant to raise my hopes and ever mindful that my true hope does not lie in medications, doctors or procedures. My hope lies in the Lord Who made Lucas and loves him more than I do, but still...

There is much more to say, but rather than wait for another opportunity for me to sit at the computer for a few minutes, I'm posting this. I'll try to get back to it soon with updates on what's next and tales of Lucas the cowboy (he rides Cappy, the wonderful horse every week!) and maybe even some pictures and video from him on the horse, Thanksgiving, Christmas, the school fashion show and more. :) Blessings, dear friends and family. We love you and thank God for your support!

Thursday, August 13, 2015

I'd like to be better

A few months back, I was asked to share at church about God being good in the midst of the "bad". I think that it is easy to look at challenging circumstances and label them "bad". Lots of folks, I think, like to blame God, be angry or add to the list of reasons for disbelief because there is so much "bad". For me, recognizing the "bad" leads me more passionately to The Good. I've heard plenty of folks talk about how "God won't give you more than you can handle", but that isn't what God says. He says He will give us more than we can handle, especially when we are trying to handle everything on our own. We aren't supposed to be able to "handle" everything. We are supposed to turn to Him. We are supposed to rely on Him. He wants to help us. He's waiting for us to ask. In the hard, in the broken, in the pain, in the unknowing, that is where He is waiting for us, yearning for us and He uses these things to drive us to Him. This isn't to say that He doesn't want good and joy and and wholeness and peace and "good" for us, quite the contrary. If, however, we have such "good", it is exponentially better for having had the "bad". Diving headlong into Him, in the midst of the "bad", I find peace and joy and wholeness and "good". If that can be found, so beautifully, in the midst of the struggle, how much more in the midst of ease! Anyway... Thinking about what I might share at church, I decided to look back over the blog posts that I've written through the years. I read about when the seizures began, the frustrations of cancelled eye surgery (which still irks me), growth spurts, vacations, accomplishments, equipment, and lots and lots of doctor appointments. Aside from being further encouraged, I also realized how much more information I used to give. In light of my grateful heart, a desire to inform and the hope of having more time to apply myself to such things as blog posts and sewing and house keeping with the school year about to begin, I offer a few tidbits of the life of Lucas as of late.....

His seizures (sz) continue to evolve. He is having more and more of the tonic-clonic (grand mal) type seizures and both these and the more (what we've come to consider) typical sz presentation in which he drops his head and stiffens and frequently ceases/struggles to breath have grown in intensity. He is still not having them in large numbers (still less than 30/day), but almost each one will wipe him out and he sleeps after having one. He, unfortunately, misses a lot of potential fun and food due to this.

The state of Missouri last year passed a bill legalizing CBD oil (derived from marijuana, low in THC-what gives the "high") for individuals with intractable sz. There are a lot of hoops and frivolous things written into the bill as well as a few things that probably should have been written into it. There are many complications, misconceptions and, well, frustrations because of this. The product must be grown, processed and distributed only in Missouri. Individuals do not need a prescription to get the CBD oil, but they do need to have a licensed neurologist sign off, saying that there have been at least three unsuccessful treatments tried. (We will be working hand in hand with a doc though. We have no interest in experimenting on our own in such an unknown area, especially with Lucas, whose sz can be so unpredictable.) This paperwork is then mailed to an office somewhere to be evaluated and, if approved, a registration card is then issued. Due to much of the confusion in the law, some concerns about litigation and the lack of clinical trials as of yet, most area physicians have been told that they are not allowed to sign the required paperwork. As of a few months back, only 7, yes SEVEN, individuals had received registration cards. We have two different neurologists, at two different top-notch hospitals, but neither is allowed to sign off, so.... We have a new doctor for Lucas!

We saw Dr. Goretzke at Cardinal Glennon hospital June 22. He reviewed Lucas' records and said he is an obvious candidate. There are two facilities locally. One says that it should have product available by the end of the year. The other says that it should have it early in 2016. We don't know if it will offer any benefits for Lucas or not. Most of the news out there about it is sensationalized on a few extreme cases. The masses who try it without success are not nearly as interesting. Also, explosive diarrhea may or may not be one of the side effects. No one wants to talk about that either. :) We plan to continue seeing Dr G as long as we are on this course of treatment. If, however, we do not have great results, we will likely bid him adieu (with tremendous gratitude) and return to Dr. Altman (who we really like and miss, but is not able to walk this with us). While we await the CBD, we decided to try an increase in one of the meds Lucas takes, Onfi (clobazam). It does't seem to have offered much (if any) measurable benefit, so I think that we are going to drop him back down to where he was, but we may end up adding Depakote to his medication regimen. He took it before, when I was pregnant with Eliana. It made me so sick. I couldn't even think of giving it to him without vomiting. I think I'll be able to handle it now though. :)

Yesterday, Lucas had his evaluation/first session of hippo therapy! (mildly disappointing to discover it is horse, not hippopotamus) He will ride a horse every week while working with an occupational therapist (OT) and being escorted by another therapist and a few volunteers. They will focus on his posture, holding his head in a proper position and reaching his hands and arms out to hold the reins (someone else holds the reins that actually lead the horse). Simply being on the beautiful animal should help to strengthen his core and legs and should benefit him in just about every area. He did ride rather slouchingly, but he did not complain at all! I think he liked it, but was not quite sure what to think of it. The supervising therapist, Holly, has already given me some great insights, ideas and assignments to help Lucas along. I don't yet have any pictures of this. He was only on the horse for about 10-15 minutes yesterday and the camera with his wheelchair beyond where I was allowed with a five year old and a baby. Eliana, at the end of the session, was invited to visit the stable and meet and pet a few of the horses. She was delighted. In future visits, she will likely get to hop on a horse herself at the end of a session.

I'm sure there is more I could say now, but I need to get to other things. Lucas will be a third grader this year and will be in a new classroom with a whole new team. The only person who will be retained is his vision therapist (who is wonderful!). We will miss his former crew, but will see them around and are looking forward to the coming year with great hope. Eliana begins kindergarten and will be attending a university styled school. It is called DaySpring School of the Arts. She will have core curriculum classes two days a week at their facility and two days a week she will be home with me as her teacher working on the assignments given by her classroom teacher. On Fridays, She will be back in school, but taking Art, Music, Magic School Bus Science and Theater classes. We are all excited about this and I'm looking forward to sharing more with y'all about both of their education experiences this year. It is much more likely that I will get to doing it too because I will have three days a week with only one child!! I not only plan to post more, but to conquer projects that have been long awaiting my attention all over the house and out and about too!

For now, I'm off. I'll try to link to more pictures soon, we have several more than what's below, but I hope these will tide you over for a while! (Crazy that Evangeline will be a year old in less than a month and I am just now putting up her birth pics! God bless you patient people! :)


Disney Trip 2015

Disney Memory Maker
Grandpa Mario
Evangeline DeSantis
Blessings and love all you dears!



Saturday, March 14, 2015

Third Time's the ... What?

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!

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.

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.


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!


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!