Friday, January 30, 2009
Well, I just got off the phone with mom and recognizing the sound of highway noise in the background, I asked where she was headed. With a slight chuckle, she replied, "Well, we are in Uvalde." She continued on telling me that last night around 9:30 JW began running a slight fever. Allie called the dr. and he told her to give him a little Tylenol and continue monitoring his temp. every hour. It stayed close to 100.9 throughout the night and finally around 5am they headed to the ER. After some x-rays and bloodwork, it was decided that JW should be started on antibiotics to treat a possible mild infection. As of 11:30am, they were on their way home. Not too eventful, thank goodness. Please continue lifting our little guy up in prayer. Though it may seem momentarily as if he is out of the woods, you just never know with these little ones when something else could suddenly pop up. Thank you for being so fervent in your prayers. God Bless!
JW, Allie, and Mom have been home for a few days now and everyone is doing well. JW has been sleeping A LOT, and we are hoping that means the reflux meds are doing their job and providing our little guy with some relief. He has been sleeping so soundly that sometimes he barely wakes up even when Allie bathes him! I would imagine he was just exhausted after those 3 days with little to no sleep. Allie and Mom are also rested and feeling better. A BIG THANK YOU to all our wonderful brothers and sisters at the Church of Christ for helping out with food, cleaning up around the house while Mom and Allie were gone, and for your encouragement and support...well, mainly for taking care of Dad while everyone was away!! We love you all very much! Also, thank you to everyone who has faithfully lifted JW, Allie, Wacy, the kids, and our family up to the Lord in prayer. Your prayers have been heard and we have certainly felt them! At the moment, things are calm in the Taylor/LaMascus household and we are hoping it will stay that way. JW went to see Dr. Lutton yesterday and he weighed in at 8lbs. 13 oz.!! He has gained almost a pound in the past week! Dr. Lutton said everything looked good, praise God! Allie also got a call from ECI and they will hopefully be sending a nurse over in the next couple of weeks to help with JW, possibly up to about 40 hours per week!!! That will be such a blessing and will offer Mom and Allie a chance to get some real rest and a reprieve from JW's tedious, round-the-clock schedule. On another note, a physical therapist should be coming over starting next week to do therapy with JW! One more much needed thing taken care of, hopefully! Thank you again for your prayers, they have passed much strength on to us and to JW. Please continue to remember him and our family.
Monday, January 26, 2009
Here is the photo I promised. Mom took this with her phone while JW was in the hospital. His arms are almost fully extended AND he is SLEEPING! I will have to get Allie to tell me more about the Botox (how often he will get the injections, where exactly they do it, and what the effects are supposed to be) and then I will report back. I talked to Allie around noon and the new monitor, which was supposed to arrive at the hospital at 9am, still wasn't there yet. They are supposed to come home today. Pray for them to be granted safe travel and that JW will be comfortable on the way home. Will update again soon.
Sunday, January 25, 2009
So we have some good news and some ok news. We finally have some answers about what has been upsetting JW and possibly causing some of his sleepless nights. The "ok" news is that the doctors believe JW has reflux. Not so great, but good that we can get to work on fixing it! He has been started on 2 medications for this and Allie says he has already been resting better in the hospital. Yay for that! The good news is that they have pretty much determined the cause of JW's episodes...his monitor! Yesterday he had two episodes, one at 4pm and one sometime in the middle of the night. Both times, he was hooked up to his home monitor AND the hospital monitor. During the episodes the hospital monitor showed he was fine and his home monitor showed his heart rate plummet! After the 4pm episode they put a brand new probe on his home monitor, but it still did the same old thing when JW had the mid-night episode. This is what led them to determine the whole issue stemmed from the monitor. So, a new one is in route and hopefully this next one will work correctly and give Allie along with the rest of us some real peace of mind. Also, mom sent me a photo via cell phone from his second day in the hospital and JW's arms were almost straight down by his sides!!! The botox is definitely working and helping his little muscles to relax and stretch out. I will try to email it to myself and upload it so you can all see the BIG difference. We are expecting JW to be released tomorrow, but that is subject to change, of course. We still aren't sure about what is upsetting JW so much to bring on his episodes of crying...where we cannot calm him down in the slightest. It could be the reflux, could be his hips, we just don't know at this point. So, please keep praying that whatever is bothering him will be revealed to Allie, us, the doctors, someone...or that whatever it is will just go away. Thank you for all your phone calls, emails, help, encouragement, support, and most of all your love. We need each one of you more than ever and we are so glad that you have been so willing to share in all of this with us. I know it means so much to all of us, especially Allie. My prayer is that JW's experience thus far in this world and all the hardship our family has faced will not be in vain but that each one of us will be a testament to the faithfulness of our Lord...His power, His love for all of us, and that all we do will bring immense glory to God alone. God's purpose and plan, particularly for JW's life, is SO much bigger than what any of us can ever possibly imagine. I am so thankful that He is in control and has been with us EVERY step of the way, before and since JW entered this world. God purposed JW's life even before he was created in the womb. I know we are blessed to have been chosen to be JW's family. Allie, God chose you! He chose us! He loves you and JW more than you can imagine and HE IS WITH YOU. Remember these things: "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6; "As I was with Moses, so I will be with you; I will never leave or forsake you." Joshua 1:5; "'For I know the plans I have for you', declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.'" Jeremiah 29:11-13. The wonderful thing is that you can rest in knowing that God is in control, His perfect plan and timing is at work in you, JW, and our family. May you feel the peace, comfort, and love He has to offer you. And may He help me and the rest of our family to love you, help you, comfort you, and strengthen your spirit when and how you need it. Praise Him for the miracle of JW's life and how well he is doing! May he continue to bless JW and heal him in every way. I love you and JW with all my heart and I am here for you both to the end of my days! Love, Lindy
Friday, January 23, 2009
So I talked to Mom and Allie about an hour ago and they were on their way home to Brackettville. JW is still in the hospital in SA. The EKG showed nothing wrong, so they still aren't sure what's causing the episodes or his being so upset at times. Some possibilities are reflux, thyroid issues, his hips, and a few others I can't seem to remember. Allie and Mom will be heading back to SA tomorrow and we hope to know more at that time. Thank you for your prayers and kind comments, phone calls, and emails. All of you are providing us with such strength and encouragement throughout everything. If you want to send Allie an encouraging word (and she could probably use one about now), you can leave a comment here or email her at email@example.com. I will update again tomorrow as soon as I hear something.
I know some of you are already aware of the situation with JW over the course of the past 2 days. I thought I would go ahead and post so that if anyone didn't know, you could be praying. The past week has been one of no sleep for Allie. JW has again been having his "episodes", for lack of a better word to describe them at this point. He also hadn't really been sleeping much at all for almost 3 days, starting on Sunday or Monday. Monday was one of the better days but Tuesday and Wednesday about did everyone in.
First, let me update on some other things. Mom and Allie took JW to San Antonio on Tuesday for another check up. He received botox injections in his limbs to help relax the muscles in his arms and legs. You could definitely tell a difference in his range of motion and just in how he was holding his arms and legs. A change for the better I would say. No other big news there. However, on their way home and while in line to get dinner in Uvalde, JW had another episode. Allie calmed him down, but then as they were pulling up to the window he had another. To give you a better picture of these episodes...it is like JW gets VERY upset about something and cannot calm down. We don't know if he is hurting, too hot, too cold, doesn't like the light, or the dark....we just don't know what sets him off. Regardless, it is near impossible to calm him down and then all of a sudden, out of nowhere, his heart rate plummets. This is often accompanied by a big drop in his oxygen levels as well. Most times he recovers from this on his own, only to do it again. Our worry is...what if there is one time he doesn't?!?! Also, we are concerned there is a link between his being so upset, these episodes and his not sleeping for almost 3 days.
Allie and mom took him straight to the ER in Uvalde and of course, he was fine the rest of the evening, so they took him home. The next day (Wednesday) he had small episodes off and on. I finally went over to offer any help I could, which isn't much since I don't know JW's routines, etc. Mainly I was there for moral support and in hopes my sister would get some rest. We were up ALL NIGHT. I got there at around 9pm and between then and 4am JW only slept a total of, maybe, 30 minutes. He also had at least 3 of these episodes. Through the first two, which happened close together around 1am, Allie called JW's doctor. He told her that if JW had another one, to go ahead and have the EMS take him to the hospital. The doctor wanted JW to be transported should anything go wrong, and so he could be on monitors where they could see the episodes and what was happening with his body at the time. Mom and Allie took him on to San Antonio the next morning after another sleepless night in the Uvalde ER. JW was stable all night, so they decided to forego EMS transport and take him themselves.
They made it 20 minutes out of Uvalde and he had another episode. Let me tell you that these episodes are nothing you can take lightly...they literally scare the living daylights out of you and you are there standing over JW hoping that he calms down and comes back from it. It is purely nerve wracking!!! They made it to the doctor's office and while in the office, JW had another episode. Thank goodness they were there for the medical staff to see it!! The doctor immediately had JW admitted to the hospital. They performed an EKG and a variety of other tests, which we are awaiting results on. Mom and Allie checked into a hotel and finally got a solid night of rest.
After staying up with Allie Wednesday night, I can tell you she has been living on pins and needles. She truly has had no rest all week until last night. JW requires around-the-clock care and monitoring. We are praying that the tests they ran yesterday will provide some answers or at least, insight as to why he hasn't been sleeping and what is causing these scary episodes.
We need your prayers during this time and on into the future as JW has a very long road ahead as do all of us with him. Please pray for his doctors, that God will give them wisdom and discernment to seek out what is wrong and provide JW with the best medical care possible. Pray for Allie that God gives her the strength and endurance needed to run the race set before her. Also, that she will take care of herself (stay healthy mentally and physically) so she can care for JW as I know she desires to care for him. Pray for our family to know how the rest of us can help Allie and JW when they need us. We all also need prayer for our emotional stability and strength as things get very tense, very quickly. We need to stay strong and praise God in this storm! We also need God's comfort and to feel his love surround us. Pray that God will allow us to see, even a glimpse, of his purpose for JW and all that JW is going through. Also, remember Wacy while he is at the Border Patrol Academy and Mitchell and Tristin who are coping with all the changes at home and trying to understand what is happening around them. I thank all of you for your prayers, we have felt them. Thank you for your love, support, and encouragement. I pray that God blesses you immensely. I will update as soon as I receive any new information.
May the blessings of the Lord be with you today and always,
Monday, January 19, 2009
Okay, okay, I know everyone of you must be mad at me, but, the last time I was this tired was when Leigh and I pulled an all-nighter to finish the newspaper's Hunters Guide.
Normally with new little ones, you sleep when they sleep, except when you have a 5 year old and a 1 1/2 year old running around screaming noooo at each other at the top of their lungs. Enough of the chit-chat.
Since coming home, JW has been doing, I think, better than expected but not as well as we all would like.
He was doing really well for two weeks and then Sunday a week ago we had the scare of our lives. I am still not exactly sure what happened but we ended up having to call EMS.
I think these "episodes" are Gods way of teaching me how to care for JW. It is very scary to know that at any moment his heart rate or oxygen levels could drop or even worse. He takes a lot of care and thankfully my mom has been here to help me as well as the rest of the family for emotional support.
Anyway, Kinney County EMS were wonderful, they got to my parents house in absolutely no time at all. By the time they got there, JW was doing better but they still didn't think something was right so they took him on to the Uvalde ER. We waited... and waited for the nurses to try to get an IV on him, he was poked so many times, the poor little guy. He had stabilized but Santa Rosa was sending a Pediatric team via Air Life to transport him there to make sure he was ok. Finally about 1 am, I think, time was not important to me at that moment, the team got there, finally got an IV and loaded us up for our helicopter ride to San Antonio.
Now, I have never ridden in any sort of aircraft, so this was definitely something new for me. One of the team members asked me if I was nervous, I told him no, that I was actually excited because I had never flown before, just not exactly excited about the circumstances under which I was going fly.
We made it to Santa Rosa and immediately got him in a room, the nurses checked him out and hooked him up to all of those monitors again. He did wonderful all night long and I actually got to sleep. Long story short, he did fine and was released Monday afternoon.
Since then, he has been doing really well, no episodes like before. I just pray every second of the day that he continues to move forward, continues to heal, gain strength and be able to hold his own.
Sorry if I am rambling, there has been a lot going on for me to remember everything especially with a lack of sleep.
Tomorrow we have a check up appointment with the pediatrician and we are supposed to meet with the pediatric neurologist, please pray for the best for this precious baby.
Thank you for all of your prayers and for keeping up with us, even though I have been very bad over the last three weeks with blogging.
Love and faith,
P.S. I will have some new pics up in the next few days, so check back hopefully by Wednesday.