James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.
We got our genetic testing results a few weeks ago and all test came back normal. No chromosomal abnormalities. No syndromes. Just you're good 'ol random birth defect of CDH. The geneticist said there really aren't any other test that can be done that would give us any answers. She did say she'd like to do some more research on the computer. I have a feeling she needs to find some medical "reason" and I don't need one. I'm pretty sure we'll never hear from or see her again.
Now on to more good news.... IT'S HERE! TOMORROW! THE BIG DAY!!!
At 10 tomorrow morning Wyatt will be admitted to Our Children's House Baylor (OCHB) inpatient intensive feeding program. James has taken the day off and we'll go down with a load of stuff to make our room comfortable and help pass our time while there. James will then return home and I will stay with Wyatt. He'll come visit and relieve me some. How often will depend on his work schedule. He will have to travel some while we're there.
Wyatt will be inpatient for 30 days. That's a long time y'all. Totally worth it but it's still a long time. He might get a few hours on Father's Day to leave and celebrate dad outside of the hospital. I'm hoping anyway!
My hope is to do some small updates each day... we'll see how that goes. haha.
He's doing really great. He's totally IN LOVE with cars and he tells me many times an hour how they "Go BEEP! BEEP!" I love it! :-) He's learning more and more letters and animals. He's able to point to some of them on the wall of his playroom. Makes my teacher heart swoon each and every time!
Oh, I don't know... What day is it? What part of the day is it? Do I love it or do I hate it? What am I talking about?????
Wyatt's G-tube (feeding tube). It's Feeding Tube Awareness Week. I wanted to blog last year this week but did not. I never got a round to it. Here goes my attempt to inform, teach and maybe just give you a glimpse into what it's like to have a kiddo on a feeding tube. :-)
Just to recap, Wyatt started with an NG tube (Nasogastric intubation). This was a small rubbery tube inserted through the nose, down the back of the throat and can dump into the stomach or lower at the opening of the intestines... and and maybe further? I don't know really, I just know those two because that's what we experienced with Wyatt.
Wyatt with his NG tube (the yellow one) at about 2 months old. He was still in the NICU at this point.
Wyatt after having his g-tube placed.
Gosh, it looks so big on his little belly!
I can't remember when Wyatt actually got his NG tube, day 1 or day 5 or later. That first week or so is a blur now. He did have what they called TPN for nutrition for a long while. The NG tube has pros and cons. Here's a short list. I'm sure there are many more and medical reasons on both sides that I'm not listing and I don't know about but this is just my personal experience and opinion. :-)
PROS: It's nonsurgical, it's more temporary, the child is most likely taking in some food/milk by mouth and this is just the get the rest in.
CONS: It is temporary, which means it can come out easily and depending on where it needs to "dump" depends on how easy or hard it can be to place back in. When Wyatt needed his to end at the opening of his intestines, the NP's had to listen and push a puff of air through and even then would usually call for an X-ray to make sure. With the NG tube, it needed to be taped in place to his face. I don't know about you, but I like to look at Wyatt's face, all of it and having these big pieces of tape all over!
We discussed Wyatt coming home with the NG tube with a few different doctors, NPs and nurses, I had mixed thoughts about him coming home with the NG tube and the risk that can go with it. Looking back now, I'm happy we didn't. I was just so hopeful that he'd begin drinking from a bottle and we wouldn't need to go the surgical route. But...
Wyatt ended up having surgery to place a g-tube or g-button (gastrostomy tube), whichever you'd like to call it, around 100 days of life (and in the NICU). I don't know if I've ever been so scared in my entire life, sending my baby boy back into surgery. I wanted to hold his hand the whole way. I did not want him on the vent. Anyway, back to feeding tubes. A Mic-Key Button was placed.
There was some talk amongst the doctors about Wyatt having a G-J tube (gastrostomy-jejunostomy tube) and/or a Nissin/Fundoplication done. I am thankful neither of these happened.
G-J tube: From my limited understanding of this, it's just like a regular g-tube placement but there is a tube on the inside that dumps into the intestines and basically skips the stomach all together. I cannot even imagine what that must feel like, always having an empty stomach. It can't be comfortable. But I also know that this is absolutely necessary for growth, development and even survival. This was not the case for Wyatt.
Nissin/Fundo: Basically, part of the stomach is surgically wrapped around the and it prevents the child/person from refluxing/throwing up, ever.... not just when eating and drinking are concerned but EVER. Not when the kid is sick with a bug or food poisoning but always preventing throw up. And from what I've heard from parents who kiddos have this, it's gut wrenching to watch their kid try and try to vomit and not be able to. A reason to have this done is to keep the person from aspirating (when food/drink enters the lungs). This can be very dangerous.
Wyatt had a swallow study done when he was about 6 months old before we began trying purees with him. The study showed, even while he was refluxing like crazy, he did not aspirate. Praise the Lord!
About a month or so ago, I called the surgery team at Children's because Wyatt's button just kept leaking and was wondering if there was anything we could do. I asked about a different kind of button and they said it's worth a try. What works for one, might or might not work for another. So, we ordered the new one and I do like it more. It's softer, lower profile but it does still leak. Oh well, I guess we're a case just that leaks. Lots and lots of button pads needed. :-)
Here is a comparison of the two:
Wyatt now has the one on the left.
Here's a video of what a typical feeding looks like. Sometimes Wyatt reads books, plays with puzzles or just sits with me and we sing or just chat. :-)
I do this about 6 times a day. Sometimes I give him a water flush. We also feed him by mouth a few times a day- sometimes successful and sometimes not so much. Wyatt also gets connected to the pump once he falls asleep for about 3 hours.
Just in case this is your first time reading our story or you missed a post or something, Wyatt is fed a blended diet. Instead a purely formula, I daily blend up food and that's what his main source of nutrition comes from.
Wyatt is eating purees and drinking liquids by mouth. It's a big roller coaster ride- some good days and some bad days. Even on the best days, he still does not eat or drink near enough to not have to use his button. It's so frustrating. I just want him to not have this struggle, ya know. And notice that he's eating purees. He is still learning how to take in some crackers and move it around his mouth without gagging and throwing up every. single. thing in his stomach. It's such a tough balance, pushing him to try and learn and wanting him to keep it all down. He needs those calories. Every single calorie counts, still. He also still needs quite a few teeth to grow in. They're coming but it's slow going. If only there were a magic food or blend that would make his teeth come in more quickly!
So, I've got this tubie momma friend, Robyn, that I go to for advice, ideas, support, encouragement, to vent, to share and I can only hope be all these things as well. She's one of a small group that I trust to really "get it". I've also got some really good friends that are there for me in prayer, support and encouragement as well. And they really engage and listen and support and come close to getting it, as much as they can and I am SO thankful for each of them for being there for me. God really has blessed me with some amazing friends to walk with. :-)
Robyn blogged yesterday about her sweet tubie son, Asher. God has gifted her writing and part of what she wrote, explains it better than I ever could with more grace than I could. So, I've copied and pasted her frequently asked questions portion. To read the entire blog entry, click here.
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Here are my top 4 things I would NOT recommend asking or saying to a mother of a child with a feeding issue or feeding tube:
1. When will he/she get the feeding tube out?
This is #1 on this list for a reason! This is the golden question I would love to know the answer to myself! Most of the time the tube is not in by choice, and so it's up the the child, when they decide they want to eat/drink. Sometimes, it's a medical issue and that is up to doctors. But, often, it's a painful waiting game. To me, asking this question just piles on to the many times I've asked and hoped for that answer myself.
2. Will he/she struggle with eating his/her whole life?
Again, we hope not. We don't know. This is just not a productive, sensitive question…no matter how well meaning.
3. My kid is a picky eater too. It's just how toddlers are.
It's just not the same with tube fed kids. Kids with tubes and feeding issues may be toddlers, and that may play a role. But it just can't be compared to a child who knows how to regulate their eating/drinking on their own and who is growing at a normal, healthy rate because of it. Many tube fed kids missed out on learning how to recognize, and regulate their hunger as young babies. So, they are having to learn about that in a different, unnatural way.
4. Giving advice.
This is a very tricky area. I would say proceed with caution on this one. As in, don't go there if you can help it. It would be like me giving advice to a lion tamer. I just don't know anything about that except what I've read or seen, which is nothing like the real experience, I'm sure. (And, let's be honest, I really haven't read or seen much on that!!)
What do I recommend you say/ask to parents you know are dealing with a feeding tube or feeding issue and you are wanting to know more about it? Glad you asked!
1. How is he/she doing? (Just in general, let the parent decide to go into feeding details.)
2. What is he/she working on in therapy?
3. How is eating/drinking going this week?
4. How can I pray for you and your child?
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It's me, I'm back. I told you she's good and gracious with her words. :-)
A day in the life of Wyatt? It's ever changing. One day can almost feel normal and the next I wonder why we even bothered leaving the bathtub or why bother washing the floors or clothes when he's just going to throw up and throw up some more.... and more.
I try not to let life revolve around feeding Wyatt but I'll be really honest when I say, our lives do revolve around feeding Wyatt. It's the gift God has blessed us with. I mean that when I say "gift" and "blessed" because Wyatt is a precious gift and we are so very blessed by him. No, it's not always easy to be a momma of a tubie kid who refluxes and throws up and has therapy 2-3 times a week but I don't think I'd have it any other way. I cherish every milestone and moment we have with him. I dream of the day we can go to Chick-fil-A and order a kids meal, Wyatt eats it and I let him up to go play and then come back and trade in his toy for some ice cream. And the entire time, I don't worry one single moment about him gagging, choking or throwing up.
I claim victory over that day. I claim victory over the day Wyatt eats and drinks enough food to not have to use his tube once. I claim victory over the day I call the medical supply company and ask them to never make another delivery again. I claim victory over the day we can say thank you and goodbye to our GI doctor. I claim victory over the day we take Wyatt's g-button out and throw it in the trash and NEVER LOOK BACK! I know these days are coming. I don't know when they will be but I know God is faithful and keeps His promises. I stand firm in His word and will work diligently to help Wyatt claim these victories as well.
This journey is different for all of us but I hope this gives you some insight into what it's like to have a tubie or my tubie at least. :-)
Happy Feeding Tube Awareness Week!
Thursday, May 2, 2013
Yesterday we made our second trip to the Emergency Room since coming home from the NICU. Praise the Lord, it was an easy fix but it was still a very necessary visit! Here are my FB updates...
Please pray for Wyatt. James Davis and I are at the ER with him. He is bleeding a decent amount from the site around his g-button. James and I could use some prayers for calmness and patience. Thank you. — at Children's Medical Center of Legacy.
I unbuttoned Wyatt's top to find this, this afternoon. His button had been leaking a significant amount with some small amounts of blood. I called GI yesterday and left a message but hasn't heard back so I called surgery this morning and spoke to someone there and they told me to call GI again. But after finding this, I decided I wasn't going to wait anymore. That was a CRAZY amount of difference in a matter of a couple of hours. James Davis met me here.
The gauze next to the super bloody one is the one from last night. I kept to show the doctor because I had a feeling we'd be called in but no I what was to come... The top one was from the time we left the house to seeing the doctor- about an hour or less.
Wyatt sleeping while he "eats" and waits to see if he tolerates his feed.
We got probably the best/easiest news possible. Praise the Lord! I can't express enough how thankful we are for your prayers. Wyatt has granulation tissue around his button site. This has been our normal. It's been there since day 1 of us seeing his button. We've had it silver nitrated off a few times now and it's never fully gone or way and has grown back. Yesterday I saw what looked like a black suture coming out of it... Not normal and with the leakage and blood, I knew something was up and I was right. This suture may... "may" be the cause of the granulation tissue all along. The NP also thought that the leaking might be that Wyatt needed a larger button placed. So he got a larger (girth) button. They didn't have the larger girth button with the correct length so they just used the next size up. They said it felt good as they popped it in. She also went ahead and silver nitrated his tissue again. We already have a follow up appointment scheduled for the end of May and his surgeon was comfortable keeping that date after talking to the nurse. I didn't start Wyatt's feed this afternoon because I figured it was better for the doctors to look at him empty so he got a little hungry but was a champ! God is so good. Wyatt is getting his feed now and they want to make sure he tolerates it with the new button and hope that there is no more leaking.... So we're just waiting and Wyatt is sleeping. :). Thank you again for praying! God is good and faithful! We should be leaving soon!
Wyatt was wide awake and ready to play once we got home! Ronix was happy to see us too! :-)
We are home now, Wyatt is wide awake because of his long, late nap but he is happy and playful! PTL! Thank you again for your prayers. We have follow up in 2 days with our pedi and 3 weeks with his surgery doctor (not having surgery).
SO, here we are home now and Wyatt never even knew anything was wrong. He isn't really bleeding anymore. He's some small residue but we had that before. His button is still leaking though. I'm hoping his pediatrician has some answers but my gut tells me, she is going to tell me to call surgery again.
Here are a couple of videos. The first one is a couple weeks old but the second one is from last night after we got home.
We made it through another year, family fully intact. Praise be only to the King! We are so thankful for what God blessed us with in 2012. It's a year I will never, ever forget for all of my numbered days. It had many difficult days that God gave us strength to get through. He showed us that He is in complete control and is a mighty powerful God. Against worldly odds, He gave us our son, Wyatt. Through His gifts of medical advances, I am able to hold my almost 6 month old, sleeping & snoring son in my arms as I type this post right here and now. Who could ask for me? Not me. Of course with my bent to sin heart, I often do ask for more, frivolous things but in all honesty, I feel like I have it all. Jesus saved my heart and that is all. The rest? Icing on the cake! Thank you Lord for the many, many people you have blessed me/us with in our lives. We are surrounded by so many that love us and pray for us.
Look who woke up!! Happy New Year everyone! :-)
"Who is wise and understanding among you? By his good conduct let him show his works in the meekness of wisdom." -James 3:13 ESV
My hope is that I can continually glorify God with my heart, my words and actions. I have shied away from making new years resolutions. As a Christian, I feel like I should always be "resolving" to be more Christ-like. Don't get me wrong, I'm setting a few goals for this coming year, especially as my life and schedule have changed dramatically these days (for the better in my opinion!). So, here it goes.... Here are my resolutions!
I want to look outward more. What I mean that is instead of focusing on myself and my immediate surrounds, I want to see beyond James, Wyatt and ME. It's a big world out there and there is a lot going on. For so long now it's been all about Wyatt and it still will continue because he is who God has entrusted with us but he can't be our only focus! So, here are some organizations and ministries I want to pray for and support either through prayer or financially. I don't feel "time" is something that is much of an option right now, that's what Wyatt gets to have the majority of.
Guatemala - These are good friends of ours, John and Sarah Herrington, with their son Jackson. They've been with us since we got married and it's been a pleasure to walk beside them!
CHERUBS - This is a research and support organization for families affected by Congenital Diaphragmatic Hernia (CDH). This is what Wyatt has/had. I don't think I utilize this group/website enough but at the same time, I think I did as much as I needed, if that makes sense. I want to help other families that have to battle this hideous monster of CDH. Not all stories are as sweet as ours has been and not all families have the hope of Christ to rely on for support and encouragement.
Berlin - These are also friends of ours. For their protection, we call them "John & Ruth". It's been fun to get to know this family and their giving hearts. We don't physically get to hang out, as we are on opposite sides of the metroplex world but through FB, blogs and text, it's been a pleasure! :-)
I do still have some self goals too. We can always improve ourselves right? I mean, who wants to be content with being stagnant? I believe there is a difference in being good with where the Lord has you and continually seeking ways to be more Christ-like and just being, not moving forward.... as well as the opposite of it never being enough.
I want to read more of the Bible and know more about the Lord and at times I just want to have more of a desire for these things. I have a friend, several in fact, that just thirst for Godly knowledge. It's like the thirst is never quenched. The one friend in particular, whom I've said all this to on more then one occasion, just keeps wanting more and it's so encouraging and convicting at the same time. I'm always in awe of the ways God is working in her. Throughout my pregnancy, Wyatt's birth, his NICU stay and now having him home, I don't think I've ever lost my faith. That's held strong but my discipline in reading and now with Wyatt being home, praying. It's like I get going in the morning with him and before I know it, I'm back in bed ready to be asleep- having not prayed or read the word... or what I feel is even worse- not whole heartedly taking in what little I did read. In the past week, I've found a blog/website called "SHE READS TRUTH" and a journaling format that can fit anything I read! So perfect! (I've read for the day but haven't journaled just yet).
Physically, I want to work out 3 times a week. This frequency used to be more but with Wyatt and his inability to go into childcare, me staying away from public germs as much as possible, and just Wyatt's needs in general keeps it limited. So, this can be a walk, yoga video, a xbox Kinect something or other count. Three times a week is doable. I can do it! Thankfully, keeping Wyatt upstairs keeps me "climbing stairs". I probably go up and down at least 25 times a day if not double... just depends on the day. :-) I know my body is forever changed and well worth it but I still want to stay healthy. James and I both have medical family histories that can go bad so we do what we can to keep it from happening.
In support of a friend and for my own health benefit I guess, I'm giving up sodas. She is doing it because of the sugar content. I drink zero or diet drinks so that can't be my reason. I just enjoy them but know they don't benefit me. So, it's hot tea and coffee for me! :-)
In general, through all this I hope I can be a better example of Christ, a better wife, a better mother and a better friend. These are my hopes!
Then there are general goals for our family and things that just need to happen.
I hope to help Wyatt to become a better "eater". Right now he's taking in ZERO nutrition through his mouth. At the end of the month, if he is ready, I hope to begin introducing solids. I am praying that he just loves the many different flavors and can't get enough. I know I, personally, can't make this happen for him but I do hope that I do everything in my power to encourage and support him in his challenges.
I also pray about his mobility. As he grows, he moves more and soon it'll be crawling or walking. How do I, as his mother, encourage this if he has to be connected to a feeding pump and oxygen? What does this look like? Oh my! So, I know we'll get it all figured out as we cross each bridge but it's just hard to imagine. :-)
We also need to begin "staging" our home to be put on the market for sale. (Anybody wanna live in Sachse? We go on the market some time in April, God willing!) I have tons of ideas and have pinned tons of pins on pinterest but we need to keep our budget in mind. The area we want to move to, will also require us to change our expectations on what our house will look like. The land in that area is more expensive so we'll most likely being going to an older, smaller home but it will put us many, many....many miles closer to James' office. Our 30 year home will be our 3 year home... hope this isn't the beginning of a pattern. Haha.
Future family. Just to seek the Lord on what the future of our family looks like. When do begin trying for Wyatt's brother or sister?
This list of things to pray about, work on... resolve...whatever you want to call it is ever changing. Our lives are continually changing, as they should be, so our goals and ambitions must as well.
I hope each of you found joy in 2012 and seek joy in 2013. Happy New Year!
Thanks Whitney & Chad for spending New Year's Eve with as a relaxing, fun night at home.
It has been 3 very busy, jam packed weeks. Between myself and Wyatt we had 20ish appointments plus a trip to the Emergency Room. Whew, I am SOOO glad that is past us now. I'll begin with Wyatt's 5 month update and pictures. It was on the 12th but I took them a week late because of our business and our camera took a trip to Paris (yes, France!). If only I could see the things it saw (in person) and snapped pictures of. I'm sure I could get a looky from the photographer.
Just to give you a picture of the craziness...
The birth announcement I made but never sent out. By the time I got a picture I liked and had it made, it was too close to Christmas to have printed up and sent out. So here it is on the blog!
Growth:He's still growing at a good rate. His GI doctor said she'd like to see him gain at least 1 pound a month. I feel like that is a fair and attainable goal thus far. Hopefully we can be over achievers and not just meet the bare minimum. lol.
Birth: weight- 4lbs 8.3oz, length- 18.5 in
Discharge Day: weight- 9lbs 12.4oz, length- 22.64 in
December 19th: weight- 11lbs 13.....oz, length- 24.5 in
Teeth: Wyatt does have a tooth coming in now. It's so hard to believe. At first I was like, no way... that is NOT a tooth coming in but when his speech therapist was here, I asked her and she said, yup, it's a tooth. It's his upper left lateral incisor. Odd right? Well, it hasn't broken any skin or anything, but you can certainly feel it up there and he's drooling enough to fill a pool so I know something is going on. :-)
Favorites: Wyatt really is such a sweet little thing. (If you're reading this in my Texas accent, you can read that as "thang"!) His disposition is just so laid back. He does have his moments but they are far and few between... as well as short lived. Who could ask for more!!??!!
He loves to chew on his nasal cannula in conjunction with his fingers. He is the master at pulling it down. I feel so bad though because when he does that, he loosens his dots (the stickers on his check that hold it in place) and I end up having to replace them sooner than I'd like. His poor little checks take such a beating with me pulling the sticker off before it's ready. Makes me hurt for him.
9 times out of 10 this is what I see when I look at Wyatt. 4 of those 9 he's as happy as can be and chewing on his nasal cannula (he's got a tooth coming in) and the other 5 he's fussing bc when he, himself pulled it down to his mouth, he did so in a manner that left it in an uncomfortable position and poking his gums. #sillyboy #lovemyson
He is still enjoying bath time. He gets a big kick out of splashing around with his feet. I end up soaked by the end. It's so much fun!
He likes to be held to fall asleep. Who doesn't right?!? He is usually refluxing some about the time it's bedtime so we tend to allow him to fall asleep in whatever position is comfortable for him. It is so hard to watch him reflux. His meds do a lot but they don't eliminate it all.
He loves looking and giggling at himself in the mirror. It just cracks me up!
He likes soft, light weight toys right now. He also likes things that light up and play music. Oh the joy... ;-)
He found his feet! James and I have been introducing him to his feet for a couple of weeks and now he actively looks for them and grabs on. He also likes to play with the slats in his crib. He'll pull his feet up to the side of him and climb them up the slats and twist himself around.
The kid still LOVES to have a nice fresh diaper on. He thinks it's just the greatest thing ever! I'm sure I'd feel the same way if I had to wear one too.
He also likes to be sung to. I'm not much of a singer nor do I remember the words to songs. In fact, I'm awful at it as well as singing in general most of the time. BUT I've mastered "You Are My Sunshine" and a couple of others. I'll sing them over and over and over again for him. I really do need to expand my choices to pull from... I try but I usually end up making up new words or getting my ipod and singing along with those songs.
Wow- he has a lot of likes. I feel like I could keep on going.
Sleeping: My little man is still sleeping 10-12 hours at night plus several little 20-30 minute naps throughout the day. He's got this loud snore. Sometimes it turns into kind of a high pitched snore... like we can hear it in the other room without the monitor. We're seeing ENT for this. In the NICU, they felt he had a narrowed nasal passage. The doctor has ordered a sleep study. From that they will decide if they need to do further testing which would mean putting him to sleep and possibly have to have surgery to correct the problem. I am unsure how I feel about a surgery. I'm just praying we don't get to that bridge... but if so, I'll cross it when we get there and James and I will figure it all out.
Feeding: Oh my sweet Wyatt. He is still not taking anything from the breast or a bottle. We have speech coming to the house twice a week to work on this process. He's got a great suck and we had a swallow study done this week. Everything was good there too. Side note: He did not like having the swallow study done. It wasn't bad or anything but he just doesn't want to take anything by mouth, I couldn't hold him and they had a big machine next to his head ready to take pictures. He just wasn't having it. I really am praying that solids will help him realize what this eating process is supposed to look like. I honestly just think he doesn't know and he's never really felt hunger. As long as he is ready, I plan on beginning puree foods in a month!
Development:In this journey that we are on, a lot of the time we have to trust the advice that we are given and just go with it and see where we land. One of the roads we were advised to go down was ECI. In short it's a government program to help with Speech Therapy and Occupational/Physical Therapy. We set up our appointment with them, not knowing what to expect. I had heard of the program but hadn't thought too much about it because we have private insurance and they've been great at approving all the ST and OT Wyatt has needed. I wasn't sure if this was in place of, along side or what so of course I went in with some questions. From my understanding, they would basically take the place of our current ST/OT. I immediately was hesitant but willing to see what they had to say. I like our ST and OT ladies and we are comfortable with them already. They did the evaluation. It was the first time I sat on "that side" of the table. As a teacher, many times I've had to sit down with parents and discuss where their child is delayed or struggling. It's never easy but wow, to be on the receiving end in this unknown environment... I didn't like it. I know their job is to look for delays or things that are wrong but it just felt like I was under the microscope. I felt my sinful nature want to lie about the things he does at home, I didn't lie. I thought to myself in the internal debate, what good would that do? That wouldn't help him. I also couldn't figure out what they were looking for him to do, based on his age, if the activities were expected or not. Wyatt was also not having any of it. He was cranky and I had to calm him down a couple of time throughout the evaluation. They left the room to calculate his scores and came back shortly. The OT said she ran the numbers twice because she couldn't believe he came out so "high" and she just couldn't believe based on what she physically saw that it wasn't showing a delay and she still recommended OT. I agree he needs OT but she was a little too "shocked" for me. And of course I know he needs speech. That's no surprise, the kids on a g-button and takes basically nothing by mouth. Anyway, I pretty much knew leaving that we were going to decline ECI services for now and stick with Therepy 2000.
One of the things I noticed at the ECI evaluation was that Wyatt would track objects and voices but if you dropped something he would keep his eyes on the hand and not the object. So, we're working on that some. His Therapy 2000 OT brought some cause/effect light up/song toys and Wyatt really had fun with that so I bought him several for Christmas. It'll be fun to watch him play with those.
He reaches for things, plays with and chews on his hands and fingers and he has finally found his feet. He hasn't brought those to his mouth yet but he definitely grabs and holds on. He is also beginning to sit up some with our support and encouragement. :-)
He still isn't rolling over front to back or back to front but he'll go part of the way. Something else we're working on.
Emergency Room
So, Thursday, December 13 we had to take Wyatt to the ER. It was our first trip and I'm sure not our last. My doctor has be amazing about getting us in to see her any time I call with a concern...I mean like within a couple hours of me calling. They've also called me back very quickly any time I've just had a question. They consider Wyatt to be a priority patient and even have us come in the back door so he isn't exposed to any waiting room germs. Amazing! Anyway, I called her because Wyatt spit up and it had coffee grounds, which is dried blood. Kind of scary. This could mean a whole assortment of possible things with a wide variety of severity of out comes. Dr. Richardson felt we should go to the ER just in case it was a more severe situation. Thankfully, it was on the lighter side. They felt Wyatt's g-button was irritating his stomach so they upped his antacid meds and sent us on our way home. I think I packed up half our house before leaving, just in case he was admitted overnight. You might say I panicked a little... but I did a good job at looking like I was keeping my cool. I just did a lot of praying on my way there. Thankfully James was able to meet us there and quickly.
The FB Updates:
Please pray for us and wyatt. We are on our way to the ER at his doctors advice bc he had coffee grounds (specs of blood) in his spit up.
Wyatt is asleep on my chest while we wait on blood work. His initial exam of the basics "look good" ...not sure where we go post blood work results. Blood came back with a little bit low hemoglobin count (10. Something) and the GI doc thinks his g-button might be irritating his stomach- hence the blood. We're upping one of his meds and if there is still coffee grounds tomorrow we need to call GI and let them know... Either way we call GI tomorrow and speak to them, which I needed to do anyway. Thank God they don't think it's an obstructed bowel or something! We're still here but should be going home soon. Wyatt is still asleep on my chest snoring. :) Thank you for praying! Please keep him in your prayers that this is what it is and nothing worse!!!
Five Years of Wedded Bliss
FB Post:
Every day for the past 5 years, we have gotten out of bed and said "I do" over and over again. Some days were easy and others, not so much but each day with you, @jamesaodavis, has been a true sanctifying blessing! God is good, has always been good and will always be good. Thank you for 5 years of wedded bliss and for our most handsome, full of joy son! I look forward to forever with you!
Friday, December 21 James and I celebrated our 5 year wedding anniversary. None of our babysitters could watch Wyatt so we just stayed in and hung out. It was great. We were really tired anyway. We have a night out coming up soon, so we'll just tack that on to that night and celebrate my 30th birthday and (hopefully) and Aggie win at the Cotton Bowl. (One of my amazing family members hooked us up with some tickets!)
MERRY CHRISTMAS!!
I'll post our WHITE Christmas Pictures in another blog. This one is long enough and I need to go to bed.
***Disclaimer: This blog post was written over the course of several days so if my thoughts don't seem to flow, they didn't. :-)
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