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.