Here is a link to my post from one year ago today…
https://louckslife.weebly.com/blog/grateful I got quite tearful re-reading what I had written then, just one day after nearly losing him. We are still so very grateful for the gift of life for Hezekiah. He is growing (not so much physically, but in other ways) and changing, making slow but steady progress. It’s exciting to watch as God continues to work out this miracle. I know I don’t post often… to be honest I wonder how many actually read, so it makes it hard to put the effort in. And now that I’m not on FB and don’t have an avenue for sharing when I do post I’m not sure anyone will read! I mentioned before that I had an idea for making sure those who are interested get notified when I post. Perhaps over the summer I will find time to put that together… In the meantime, if you’re here reading please drop a line in the comments!
0 Comments
In the recent post about Elli’s birthday I mentioned how God’s plans are not always our plans, and that He always knows just what we need. We are currently in the midst of another of these situations... Don't freak out... yes, there are two pictures of THE baby. There are not, in fact, two babies. *Whew!*
To be honest, if God had asked me what I thought about this plan ahead of time I would have given a hearty response of, "No thanks!" Having some time to process since we first found out has certainly helped to soften my heart. Over the last year, I have experienced three miscarriages. I truly felt that was it... we were done. And I was totally okay with that! When the test was positive all I could think was "I do not want to be pregnant!", but I also didn't want another loss. I wasn't happy, and wasn't happy that I wasn't happy. Now, twenty-one weeks into this pregnancy, feeling baby move and knowing we are having another boy, I am feeling so much better about it all! Even though it's only been 2-1/2 years since the birth of our youngest, it's been 4-1/2 years since our last "typical" baby experience. Also, believing we were done, when we did a big purge this summer, I got rid of all of our baby clothes. Ha! So glad God has a sense of humor. Also, thankful for a friend who had a very large bin of maternity clothes I was able to borrow! For those of you who don't know our story, or are just wondering why we don't do something to prevent having more babies, here is the short answer: We feel a deep conviction that God has called us to accept whatever blessings He sends our way, and in His time. If we were to do something to prevent another life, we would have to answer to God for that action. If you still think we're crazy, please keep those types of comments to yourself. Perhaps take some time to pray about it. After all, as I've reiterated time and time again, this is GOD'S plan, not ours. I haven’t figured out a way to copy and paste an entire post and pictures from my old blog to this one, but here’s the link to a fun post from 8 years ago:
https://kjllovemylife.blogspot.com/2013/02/pirates.html February 2nd. Groundhog's Day. Also, Elli's birthday. Our little groundhog turned 6! Six years of spunk and spitfire. While adding another child to our already large family just 14 months after the previous wouldn't have been MY plan, God knew she was just what we needed. That's the thing about God... His plans are always better than we could imagine, and our plans often fall short of His best for us. We've seen it time and time again in our journey. When I found out I was pregnant with Elli, God and I had words. It wasn't the first, or last, time this has happened. I don't always agree with what He has planned for me. Yet, as I said, His plan is always better, and He always knows just what we need.
At 6, Elli is VERY into unicorns. She enjoys all things "Frozen". She has opinions and is not afraid to share them! She loved the idea of going to school, but isn't loving going quite as much. She does enjoy her teacher and classmates, so it may be an issue of having to follow someone else's plan for her day. ;) I love the American Flag and what it stands for... or at least what the creators of the flag intended it to stand for. I am saddened over the state of our country and the division that has become more and more prevalent. I am encouraged by the fact that GOD is in control! I pray that this season of unrest serves to bring to light long held evils, and I rejoice in the fact that we can KNOW WITHOUT A DOUBT that GOD WILL BE VICTORIOUS!
In particular, I love the flag in the picture. It represents even more to me than other flags. This flag is HUGE. It flies at Ryan Electric in St. Cloud, A few months ago Ryan hired Tim as an apprentice electrician. Tim enjoys his job so much, and the job provides needed financial security. While working there these past months, Tim has been treated with so much respect by his boss and co-workers and has learned much. Also, his boss is a true Patriot who loves his country and will continue to stand for freedom even as so many in authority now OPENLY wish for our freedoms to be limited more and more. Pray for our leaders (even the ones you dislike or with whom you disagree). Pray for our country to turn their hearts back to God. Give praise to the One who is in control, even in uncertain times. Well, wouldn't it be great if I had a bunch of pictures of all of us enjoying our time together? We did enjoy our time... I promise! But the only picture I managed to take was of the deviled eggs. LOL
Much food was eaten (including ALL of the deviled eggs!), many games were played, many gifts were given and received, much noise was heard! We were grateful to have both Alex and Chase home with their "girls" -- Cheyanne, Carley, and 8 month old Evelyn. My parents were also able to join us for the day. Ki slept through most of the festivities, despite the fact that much of the hubbub took place just a few feet from his spot in the living room, but seemed to really enjoy opening his gifts later. :) It is my sincere hope that each and every one of you found some happiness over the last few weeks, and that you will continue to find joy even in the difficulties of the new year. 2020 may be gone, but troubles are still sure to find us. Know that your identity or your happiness and joy is not found in your circumstances, but all can be found in your Creator. P.S. I fully intend to get a picture of all of the kids together, but I think I've decided to just wait for the arrival of the new grandbaby at this point. Benjamin should be joining us quite soon! You know I will post that picture once it's taken. ;) We are home and happy to be here! I will expand on details later, but scans this morning looked good and neurosurgery gave us the all-clear to come home! His hair is extra crusty from surgical “shampoo” and such but we can’t wash it until AT LEAST tomorrow, and they would prefer we wait even one more day. I don’t think I can! It can NOT feel good! But, we’ll get it taken care of when we can...
Praising God for a brief stay and asking for a speedy, full recovery. This morning I managed to get out of bed and out the door with Ki and his overnight nurse and all of his gear with enough time to make our 6am check-in at Mpls Children's. Ki was taken to the OR at about 8am and surgery started at 8:55am. By 10am the surgeon had come to give me a report. He was doing well post-procedure. For those who are interested today consisted of a "revision of right parietal VP shunt with replacement of ventricular catheter". Basically, the catheter from the ventricle to the shunt was plugged, and while it was still functioning a little bit, it wasn't enough to do the job it needed to do. If this issue continues to occur the neurosurgeon will consider an alternate placement of the catheter. One thing that happens every time he has surgery is that they cover him with warming blankets when they're done. No matter how often I tell them he's really warm and doesn't need it, they still do it. *shrug* So... we spent the better part of the afternoon trying to bring his temp back down. Icepacks and some meds have finally done the trick. He is currently getting a continuous feed through his g-tube, but oral feedings are being withheld for now. Tomorrow we should be able to resume his normal feeding schedule, and I am hopeful we will also be able to discharge sometime in the afternoon. They will perform a scan of his brain to make sure everything looks good. If it does, and he's physically doing well, we should be able to get out of here. Thankfully he has rested well. Praying that continues through the night. Unrelated to Ki and his surgery... today is the 18th anniversary of the second time Tim and I said "I Do". I love you, Tim! Hopefully next year we can celebrate together...
My witty title game is a little off... sorry. LOL On Wednesday morning we headed to the Cities bright and early... the day was bright, I may not have been so much so. LOL As usual, Ki tried to throw a major fit when we put him in the van, but we were able to get on the road with enough time to arrive at Children's before our 9:30 appointment with the audiologist. His hearing aid fitting went great, and so far he seems to be adjusting to it quite well! He did cry when we first turned it on, but but after taking a little break and giving him a bit of time to get used to the head band (it's a bone-conduction aid, not an in-ear aid) we were able to turn it on again and have a much better response from him. He even got to do a quick FaceTime with Daddy at work and hear his voice. :) The trick at this point will be to keep the headband in the correct position on his head... he likes to lift his eyebrows/move his forehead and wriggle it down over his eyes. LOL At that point the hearing aid is no longer making contact with his head and doesn't allow for good reading. Happy to have this new "tool" in his arsenal! On the way to the Cities I made a call, once again, to the neurosurgery clinic to see if perhaps there were new openings/cancelations for MRI that we could make use of to save the early trip Thursday morning. Once again we were told no, but to check before leaving audiology. While meeting with the audiologist I got a call from the hospital regarding his Thursday appointments (screening for "the virus") and asked again. Sadly, we were once again left with news that we would need to come down in the morning as there were no openings in the schedule at either location. After leaving the appointment I was able to meet up with Brittany. She met Ki for the first time, and even held him for a little bit! It was nice to see her again, and hear about some improvements for Esther. She still has a long journey ahead of her, so please keep Esther and her family in your prayers! While visiting with Brittany I received ANOTHER call from the hospital regarding the MRI for the next morning. This time it was one of the coordinators asking for all the vent information they needed for the respiratory therapist (his home vent can not be used in MRI so they have to have an RT and a hospital/MRI-safe ventilator for his scans), and wondering if there was ANY way we could arrive earlier than 9am as they were concerned we wouldn't get through our scan in time to make it to our appointment with neurosurgery. I let her know that even 9am was pushing our threshold and then said I'd been calling off and on since Monday trying/hoping for a cancellation so we could get in while we were already down there. She replied, "For a quick-brain!? Absolutely!" I was beyond relieved!! We got an appointment in St. Paul for early afternoon. We still needed to plan to drive down for the 10am neurosurgeon visit, but it gave us an extra hour of cushion in the morning to deal with anything Ki might decide to throw into the mix. What an answer to prayer! The MRI went well for our little superhero... he cooperated and they were able to complete the scans quickly. On our way home from our day that had suddenly become far fuller than anticipated, I received a phone call from Amber, one of the members of the neurosurgical team. She asked if we'd left MRI yet... at that point I had a feeling about the direction of the conversation... The radiologist had called and let her know that his ventricles are significantly larger than his previous scans which were done in October. Bummer! There were other info-gathering questions, and then she informed me that a revision was needed and we could skip our Thursday appointment, if we were comfortable with that, and look at scheduling surgery for Friday or early next week.
Logistically, waiting until next week is SO much better... school is out, so no need to find rides for school kids or sitters for younger kids, and more time to plan/pack. So, currently we are looking at a VERY early arrival at Mpls. Children's on Monday morning (I am NOT a morning person, so 6am may as well be the middle of the night -- especially when it means a 4am wake up call!), with surgery at 8am. If I remember correctly, his previous surgery - even though they replaced the entire shunt - did not take a terribly long time, so I imagine this will be fairly quick. He will be required to stay at least one night for observation. Praying this overnight is far less eventful than the last and we can head home Tuesday afternoon. Obviously, we appreciate prayers for safe travel, safe surgery, and fast recovery! If I'm lame and don't update again before Christmas... Merry Christmas to all of you! We’ve had two appointments added to our schedule for this week... both semi-unexpectedly. The second appointment we added was for his hearing aid and will occur on Wednesday. When I met with the audiologist last month to pick out the hearing aid she couldn’t give me any kind of timeline regarding when we might get the aid ordered. I was told it could be a few weeks, or it could be several months. Everything was dependent on insurance. So, we were in standby mode. Late last week I got the call that his aid was in and ready for fitting! I tried to get that appointment for Thursday, as that’s when his other appointment was already scheduled, but the audiologist is in surgeries on Thursdays and unable to meet with us then. It will be interesting to see if/how his vocalizing changes when he can hear more clearly. It will also be interesting to see how overwhelming his sibling noise will be once he can hear their true volume. ;) Our Thursday appointment is for a quick brain MRI to check his ventricles, followed by a meeting with the neurosurgery team to go over results. During his last visit with the neurosurgeon it was mentioned how nice it is that his fontanel is still open as it gives us kind of an indicator to monitor inter-cranial fluid pressure. Well, in recent weeks the fluid there has not been fluctuating as much as normal, and it’s begun bulging more. There have been other minor “symptoms” that tell us it’s time to get things checked out. While I’ve been praying against it, I have a sense that this is an indication another revision is needed. Of course that will entail a hospital stay. *sigh* So, on Thursday I will pack a bag and hope not to need it!
Pray for Ki, boldly asking God to fix the issue with the shunt so we don’t need another surgery. Pray for our travel in the morning both Wednesday and Thursday; clear roads, little traffic, and no complications from the littlest passenger (he likes to delay our departures and keep trips “interesting”)! While you’re praying, please include our friend Esther. She is a precious one month old with TD and could really use some miracles. Her story is found on Facebook here: https://www.facebook.com/estherroselea/. I had the privilege of meeting Esther’s mom In person when I went (alone) to the hearing aid appointment last month. You can find pictures of that meeting on Esther’s page. :) |
AuthorHi. My name is Kristin. I am wife, mom, friend, Christ-lover. Thanks for stopping by and sharing in our story! ArchivesCategories
All
|