Luke's doctor visit x5

So we had a big day yesterday visiting doctors. We ended up doing a lot of extra things. The day originally had two appointments and when his g-tube site was looking really bad and not getting better by normal methods I added a trip to the surgeon to take a look at it. We also had an order to get some blood for some allergy testing. I really don't like taking Luke to get blood drawn. He is a really hard draw, it usually involves at least 3 pokes and Luke in tears and me close to tears. I had put it off for months and finally decided since we were going down to do it at the lab that I like the best, probably because they deal with a LOT of children. So we are up to 4 places to stop now. And then on stop 2 we got a script for AFOs, braces for Luke's feet, that we needed to get molds taken of his feet to make which I decided to schedule since we were down there. Wow it was a big day. Thankfully Spectrum Health and DeVoss have consolidated many of their specialties and we only had two actually locations to go to.

So here's how it went:

Pedatric Seurgeos - stop 1

Luke has some nanstly looking granulation tisse around his g-tube site that just won't go away. The doc decided to try to cut some off and cautarize it with silver nitrate. They don't have nerve endings so this doesn't hurt. It is just hard to hold him down espeically when he doesn't like people looking at him and touching him when he thinks it is going to hurt. He did so well though that the doc cleaned the whole site up and it looks great! Onward....

So now I have to go through this building and two hospitals and into another office building (without going outside which is very nice in the winter). However, since we didn't come in time to park at the other building where we would be spending the next 3+ hours I was walking the kids and Kevin was moving the car. I don't like to be far away from the car in case we need extra, clothes, diapers, oxygen... So I had Hannah in the Boba carrier on my front, a large tool bag stuffed with kids thing over my shoulder and I was pushing the double stroller with Luke in the front and the vent sitting in the 2nd seat with the suction hanging off the back and the oxygen, pulse ox and my purse shoved in the bottom. I am sure we were a site to see. But we made it with no incident and got to our next appointment at orthopedics....

Orthodicts - stop 2

When we were at neruodevelopment last they wanted to make sure someone looked at his hips since he wasn't walking yet to make sure they were okay. Our PT said he just needed to gain more strength in his hips. Since we were at ortho we asked the doc and she got his hips x-rayed and showed us that everything was doing well and since he has neuromuscular issues that it is probably just that and he needs some more time. She did prescribe AFOs which are braces to help him with stability in his ankles. When his ankles are more stable he will be able to work on getting his muscles strength and balancing in his upper legs, hips and core in order to stand better and walk.

Luke's clubbed feet are being corrected by the Ponsetti method and doing well. His left one is still way worse than the right. The right is I think about normal now. They left one has just the amount of range of motion that they want to see. Ponsetti (or his group because he has passed away) has changed their recommendations to keep the braces on at night until he is 4 years old and not just 3 years. Also, our doctor is changing practices and so we will get another doctor next time we go. Fortunately the new doctor does almost exclusively clubbed feet. Just the doctor for us.

I must say the new offices are great. They have couches!!!! and more room for our moving NICU to get in. We were comfortable and there we weren't moving the stroller around every time someone needed to move to a new place in the room.

Blood work - attempt #1

Kevin and I were not too hungry and so we decided to get the bloodwork done before his 1:00 p.m. appointment. Well I guess a lot of people thought this because we were there for 45 minutes and finally next in line and it was time to go to pulmonology. Pulmonology will not wait and since we were first after lunch were ready for us. Fortunalty the lab said they would put us back to the top of the cue when we came back.

Oh and during this time I had to feed Hannah. Looking around the room there were two empty seats and they had people leaning over the shared arm rests from other seats. Not a good place to nurse. So I decided to go to the pulmonlogy waiting room which is huge and was fairly empty. When I walked in and told the room coordination why I was there she offered me an empty office. Bonus! Hannah is VERY easily distracted while nursing and thus far had not nursed well in the car when we stopped to feed or change Luke because she was too busy watching Luke and Kevin. So I was happy for a quite, distraction free place to nurse.

Pulmonary - Stop 3

We had a good visit to pulmonlogy. We got a blood pressure for Luke for the first time in over a year I think. Luke HATES to have his blood pressure taken. He sees the machine and goes nuts. This kid is strong. He is flails so much the machine does not read and if it does get a reading he is usually so worked up that it is not accurate. He was sitting on my lap facing me which I thought was good. The nurse was going to annouce what she was doing and I shhed her and said to just slip it on. Kevin was great and brought Hannah over and we had Luke point out the ducks on Hannah's feet and her nose and all sorts of things. He made a little fuss when it squeezed but mainly we were good to go. Luke is growing well and now down on the 40% for weight and around the 11% for height which puts his height to weight ratio at a much better place, maybe around the 50%, I didn't look real close. But he used to be 98% or more. Yikes!

We are just keeping doing what we are doing lung wise for Luke. We will need to see a cardiologist to clear him for jaw surgery this summer and if his heart looks good we can think about weaning some of his oxygen at night. Right now he sits at 98-100% almost all night on the 0.3L of oxygen he is on. The doc is hesitant right now because they saw a dip to 86% oxygen which is not good and she said there are studies that show dips in oxygen being very hard on the heart. So I understood that and we will have to see.

Blood work - attempt #2 Stop 4

So after pulmonlogy we got right into the lab for blood work. Luke is a super hard poke and he really hadn't had a nap and it was after 2 p.m. and after all the visits I saw that this could not be good. Hannah was asleep in the carrier at this point and stayed asleep through the whole thing. Me moving around, leaning down, singing, all of it. We have found that Luke's feet are the best place to get blood from him but they always have to check arms first. Kevin was holding Luke his lab and another lady and I were working on holding him still. The lady who was taking blood we have seen before. She found what for Luke is a good vein in his right arm and as she was going in he jerked and we lost it. She dug around in that arm and tried the other and then went for the foot. She said next time she will only have to try one arm. Luke is super upset. I am trying to sing "Wheels on the Bus" the only acceptable song and the song that must be sung when something is going on that Luke does not like. He requests it if he knows something is coming. But we got it done. Allergy testing, CBC and blood gas. I forgot to call yesterday with the results and so I will have to do that today.

AFO fitting - Stop 5

Since we don't go down much and I didn't want an extra trip I squeezed our AFO fitting at 4 p.m. Luke was soooo not happy about it but the therapist doing the molds was great and fast. We will have to go back in a few weeks to pick them up and make sure they fit correctly.

The car ride home was pretty uneventful. Luke did not sleep, although he must have been exhausted, but he just sat and nicely looked out the window and was just a wonderful car rider. Hannah on the other had started to loose it. Her bedtime is around 7:30 p.m. and we were past that and she hadn't had any really good naps so she was really fussy. She was so tired and just wanted to sleep in her bed I think. Poor girl. She was also awake for most of the car ride back. Normally she is a good car sleeper but I think she was just too overtired to sleep.

We are recovering and Luke just played and played yesterday, I had a lot to do and a major poop incident from Hannah and so didn't have much time to play with him (and the time I did sit down to play he wanted to watch Signing Time). He was just fine playing by himself. I think he just wanted some time away from people after all the doctor visits.

So there you have it. A very long day but I getting a lot done.

Feeding Tube Awareness Week - Life with a feeding tube

Luke eats through a tube. He has never eaten orally and right now is not allowed to eat anything orally as we are not sure that his muscles and all the swallowing parts function. We do think he can swallow but as a three year old who has never practiced it would be dangerous to try as he could choke on his food or fluid could get all they way down into his lungs causing an infection and difficulty breathing. So we feed Luke through a tube. So what does that look like?

(click the pictures to see a bigger version)

Luke plays with toys while eating. We also encourage him to put an appropriate toy in his mouth to associate oral stimulation with eating.

This is a picture of the actual button that we feed him through.

We used to hold him and feed him. As babies are held to get nursed or bottle fed. We probably held him until he was 2 years old or so. Then we moved to the high chair. I have been trying to make his live as "normal" as possible within the limits of his medical issues. So he eats in a high chair. He usually doesn't eat when we do as it is hard to feed yourself and him at the same time, although it can be done. We are lucky that Luke doesn't have any digestive issues, he just isn't able to get food to his stomach so we help with that.

Luke is fed 5 meals a day. Right now I blend up his entire day's nutritional requirements and then divide it up in 5 equal parts. We have thought about making 3 bigger meals and 2 snacks but our lives our a little crazy and 5 equal meals is working right now. We feed Luke real food that you or I would eat (or maybe not, he eats beet and turnip greens, and is a very good disposal for nutritious veggies from our farm share that we don't really like or eat as much of). For more on his food go to these posts: Blenderized diets. I must say that the medical world of tube fed babies, children and adults in American seems to be centered on feeding tube fed people formula or some form of it. And yes some people have allergies or special requirements and they need this formula. But for the most part I really don't like that the medical professionals are so against feeding real food to tube fed kids. I have had my run ins with dietitians. I have found that it is easier for dietitians and others to calculate all their calories, fats, proteins, ect.. when they can just read it off a label and it is all neat and clean. I have had a conversation with a dietitian where I was asking a question about fluids and she basically told me that if I was using formula it would be she could give me an answer right away but she would have to have me submit to her Luke's blends of food so she could run them through her program. So I asked my pediatrician, which I should have in the first place, and he gave me an answer as he would for other kids. Luke is just another toddler. His food just arrives at his stomach a bit differently.

Okay so what does feeding with a feeding tube entail. Well you need to make sure you have enough supplies. If you don't have tubes that connect to the button that connects the outside world with his stomach then he can't eat. If you don't have a syringe to put on the tube, he can't eat. Also, you have to make sure the button that connects to his stomach is working and doesn't fall out. The hold the button is through is a constant open wound. Think about that, having a constant open wound. Before Luke was very mobile he had the best g-tube (even though it is a button that is what it is called) site the doctors had seen. Then he started crawling and standing and walking with his walker and it does not look good anymore. We are constantly watching it and it bleeds and oozes and there is a lot of extra skin growing. It can get infected so cleaning and constant care are a must.

One thing that is hard for us is that if you forget food, or are somewhere and aren't going to get back for dinner normally you would just pick up some food, either at a restaurant or grocery store. With Luke if you forget his food, you have to go back to get it, or get back to the house if you forgot it. We were on our way downstate and forgot it, thankfully my dad was able to go to our house, pick it up and then meet us halfway back home. We had left early thankfully so we were only a little late that day. There is a lot more planning ahead and awareness for meals for Luke.

Some pluses of eating with a tube...

you don't have to taste those icky nutritious things

you can eat while you sleep, although lately I am trying to not be feeding Luke when he sleeps

it's easy to eat a perfectly balanced diet

Kids are super curious which is good, I don't mind telling them about Luke and his tube and they usually think it is pretty interesting and sometimes cool. Parents get a little weird when their children stare or ask questions. To parents I would say if you see your child looking take that as a cue to ask questions yourself and you and your child will learn. I have heard other tubie parents say they have had some bad reactions from people. I haven't seen this and I am glad. It is a little odd and takes some explaining when someone wants to just give your child food (we are so protective and must look it because it has only happened once or twice to us) and you tell them they can't have it. You usually have to explain its not just you don't want them to have sweets it's that it is dangerous for them to have it.

Luke does get hungry, although not often, we feed him on a schedule and he really only complains and gets ansy when we are off the schedule by a lot. He knows his food and syringe and tube. He likes to watch the food move to go in.

Right now we expect Luke to eat one day. We are doing oral motor therapy to get his muscles working for when that day comes. We are also working on getting him tasting things off his finger and putting small amounts of food in the back of his mouth with a syringe to start training him to swallow it.

So there you have a little of life with Luke and his feeding tube. :)

Life at the Calhoon Circus

Life with a almost 3 yr. old (on Sunday!) with special needs and a 6 month old (tomorrow) keeps Kevin and I busy.

Hannah news first: (scroll down to read the Luke news)

I am sleep training Hannah. I read "Healthy Sleep Habits, Happy Child" which is about the crying it out (CIO) method. We tried for three nights. I had 3 hours, then 3.5 hours (then I fed her and she went to sleep shortly afterwards), then 4 hours of crying in which I got up and fed her again. I realized this wasn't going to work for us since she was getting worse and not better as people who have had this method say happens. So I decided to let us get some more sleep and try again in a couple of weeks. Friends had told me about using the Ferber method which is CIO but with the parent coming in for reassurance. I got a hold of his book "Solve Your Child's Sleep Problems" from the library a few days ago. Both books made very good points about the benefits developmentally of getting good sleep and to get good sleep you need to be able to fall asleep in conditions that you can recreate so that when you naturally come out of sleep at night you can go right back. This all made sense. Hannah is not an awful sleeper but she sleep in our bed but would not usually go down until 11-12 for the night and get up between 7 and 8 instead of sleeping 7-7 or 8-8 or for any 12 hours stretch like babies should at her age. And she would wake up 1-2 at night to eat. I had after the first book gotten her on a better sleep schedule and so at least she was willingly going to bed between 7 and 8. But then she would get up after 1-2 hours like it was her 4th nap of the day and want to be up for 2 hours more. But I was on the right track. I even had her laying down for naps awake and not putting up much fuss.

Waking up to Hannah in my bed, sweet yes but I can still see her sweet face in her bed.

So I thought I would try the Ferber method last night and I got her to sleep in her own bed all night for the first time I think EVER! It felt great. I really like my space at night and I am a tosser until I fall asleep and Kevin may say that I am a tosser all night. I did miss a little cuddly baby a little bit though.

Oh and something else funny about this whole sleep thing. The other night I was all set for her to wake up around 9 and be up for a couple of hours. I had gotten my second wind and was ready for the get Hannah back to sleep show. Well as I was rocking and walking and swaying with a warm baby against me (she was in our Boba carrier) I was putting myself to sleep and not Hannah. I get crabby when I get tired and I noticed I was getting crabby with Hannah that she just wouldn't go to sleep. I looked at the clock thinking it had to be 12 or later and it had just turned 11. This is when I realized that my efforts were working on me more than Hannah. Oops.

Even daddies can wear cute little babies. :)

On other fronts Hannah is sitting up by herself and doesn't fall over to much anymore. She is really good with her hands. When Luke was little the therapists would ask about Luke's two handed play and how well he was using his hands. I would say that yes he was using two hands here and there and of course I thought he was doing great. Now I realized that even as he was using his hands it was not anywhere near where Hannah is. Not trying to say bad things to Luke, just a realization.

Hannah is also laughing and smiling tons. She is having fun standing in her bouncer. And did I mention she is a ham for the camera. She loves to smile and pose for the camera, just like Luke, maybe he taught her.

She LOVES to eat. We call her a piranha. We have been feeding her squash, yams, bananas, apples, plums. avocados and mangoes so far. She does great and if you are finished with the food you prepared and she is not she will scream very loudly for more. She is a great eater but in my excitement with her eating have fed her too much food with too little water content and she got a little backed up yesterday. However, she is unstopped and I am watering down my food a bit. I am feeding her food cubes from non blended but just squash and the others cooked and scooped out, or mushed manually. We had some baby food in jars and I have been using those to water things down as they are very liquidy.

Now for LUKE:

Luke is doing great! He got a new walker with some wheels that will grip a bit better on the solid surface floors. He seems to like this walker better than the last one and does not hesitate to use it when asked and does not mind standing in it. He does get distracted by everything to look and pointing at from his new higher view and so it is sometimes hard to get him into actually walking. He wants to keep telling me things which means he has to stop and take one had off the walker to talk.

He is also climbing stairs. He can do it all by himself, with lots of close supervision. Right now he doesn't ever crawl over and try them himself. He always waits for us to put him on the third stair or so. I don't mind this as it is kind of a built in saftey measure. I am sure it will end soon but for right now I am all for it.

Luke is doing great with wooden blocks. He has colored and non colored sets mixed together for some color as well as shape interest. He really likes to line them up and count them. He also will organize a number of them one way then switch them around. I tell him I like how he designs the blocks. In the past couple of days he has seen me make pyramids and bridges and so had started to copy the patterns and make them himself. He is good at the three block pyramid and then will build more blocks on top of the middle block. He is still working on perfecting a bridge (or arch). He will ask me to make them and he likes to push the other blocks underneath.

Luke's fine motor skills are getting better as well. He has gotten a lot better at putting his legos together. He is also better and manipulating pages and movement things in books. Oh and he still is really really into books. He has some other block puzzle and blocks to string like beads that he plays with while we feed him. He is learning how to string the blocks and take them off. He hasn't quite got the hang of it yet.

Luke still claps for himself after doing something he likes or he thinks you will like or when he does something good. Luke just likes to clap for himself. I think it is kind of how he shows us he is happy. Although he has a mad clap too, interestingly enough.

Luke has been pretty healthy this season so far. No ER visits yet and hopefully there will be no more. We have taken care of some viruses and bacterial things here at home with increases in his meds.

I have been laying a full length mirror on its side for the kids to play in front of and they both like it. Luke likes to sign and move his arms around in it. It will be in their play area and when he sees it he will starting moving his arms and watching himself. It is pretty cute.

Oh and what about Kevin and I you may be thinking. We are doing great and I am happy to say that our marriage is as strong as ever, probably stronger. We find moments here and there to laugh about our days. Yeah its hard to have little personal time and to never have enough time, yea I break down. But we get through it, together.


So a bit blog post done in more time that it took Hannah to cry herself to sleep (progress!)