Let's Get Him Fat!

So...last time we left you, Luke had sniffles and a slight cough. Well last Saturday night I didn't want to push it anymore and wanted to be told he was okay. So at nine o'clock at night Jonathin and I took off to Goshen ER with Luke. It was a whole different world there, no doubt about it. Instantly we were taken back and the doctors saw him before we even had him undressed. They were more knowledgeable about him being a preemie and from Riley. They even commented on how he didn't look like a preemie due to his head shape. As you can remember there was much work put into Luke's toaster head while on the ventilator. Within 2 hours we had an x-ray and a sputum sample and were on our way home. It was so nice for the x-ray to come to us. When we are at Memorial we have to go clear across the hospital to get it done. Luke wasn't as much of a fan of the sputum sample though. However, he was negative for RSV, Flu 1 & 2...yay! His x-ray came back with a little cloudiness in one lung, but they couldn't compare to others from before. It could just be from his chronic lung disease. He also had a minor ear infection. The doctor decided to treat him with an antibiotic for the ear and as if he had a touch of pneumonia. I was just relieved. Needless to say, we all slept better that night.

On Monday afternoon Luke and I headed to Indy for our first road trip alone. We did pretty well I think. We only stopped once in Argos for a little nose sucking. I don't think it bothered him, just his mom. We spent a little time at our hotel, then went to visit Danielle and Cassie. It had been awhile since they had seen Luke. They used to visit him often while we were at Riley. We had a good time catching up and Luke had a nice conversation with Cassie while Danielle made dinner. Then we went back to the hotel to try and get some sleep before our early doctors appointments. Luke had other plans. Instead we stayed up and watched many hours of Duck Dynasty, not that it bothered me too much. At least it was good entertainment. Even with our late night, we were ready for out first appointment at 7:50am.

These appointments used to seem like a lot of work to begin with, but now after 7 months of them, we are finally getting the hang of it. Of course the first appointment was with Developmental Pediatrician. We did not have a good appointment last time we saw them. You can reread it here...Don't Treat Us Like Failures. We were seeing a new doctor that was recommended to us, Dr. Keck. She was great with Luke. She was friendly and helpful. She was happy with Luke's growth, except for his weight....no surprise there. So the dietitian was called in. Luke's weight to length ratio isn't great. Since Luke still isn't a bottle baby, we had to figure out how to gain weight with his habits. The answer....PURE BUTTER! Luke will now be eating high calorie baby food with a teaspoon of butter in every jar. Also, since Luke isn't getting a lot of protein in his formula he will have to start eating baby meat. So once a day Luke will have a jar of meat added to veggies. She offered to add it to cereal and fruit....gag me! I couldn't ruin all foods for this little boy. His doctor describes him as an opinionated eater. She would like to have him seen by the speech therapist...been there and was then forgotten about again. She would like to see if they can break him of his habits. If that doesn't work and he doesn't start catching up with weight we will be recommended for an inpatient stay. They would have Luke for a week or so inpatient and a team of specialists would work with him. Including a psychiatrist...lol. We shall see about that.

We had an hour to waste before our last appointment so we went and sat in the main lobby for awhile. Luke napped while my mind wandered. All the noises and the surroundings brought me back to the 3 months we were there. It seems like forever ago, but then I could be right there again tomorrow. That was our way of life for so long. I think it will be interesting when Luke can finally know this amazing place and what they did for him.

Lastly that day we met with our Pulmonary Nurse Practitioner. Nancy was happy with how Luke looked and sounded, even after his ER visit. She was also happy with his growth and weight gain. She doesn't see the weight and length ratio, she just sees what he has gained over the past month. Since Luke hasn't had a trouble really over the winter she was happy if we don't see her till the end of August! That is only if we have problems this summer and if we need her help to get Synagis shots next fall/winter. From a baby that was on a ventilator for 2 months to where we are now...amazing. I never thought we would get to this point for quite a while.  After that good news we headed home. The ride home wasn't as easy as the ride down. Luke was tired of being in the car seat, and I didn't blame him.

He has started his new feeds and hasn't done too bad with it. Hopefully he will keep it up. We still haven't closed on our house, hopefully on Tuesday at the latest. I think Luke will be happy too when we move. The poor baby has no toys or entertainment other than his swing. I think Mom is getting pretty boring to look at and play with daily.

Not so happy with his meat.

Sniffles

Well this warm weather has finally gotten to Luke. The night before last we started with some sniffles. Slowly they have went to more of a stuffed nose. The nose sucker has been unpacked for use with no success. The inhaler has also been unpacked for occasional use. Finally this morning the nebulizer has been unpacked. This is the worst part about packing early, you never know what you are going to need. The good thing, Luke hasn't slowed his eating pattern with the cold. And on Monday we leave for Indy for a Pulmonary appointment on Tuesday morning. That makes me feel a little at ease with his cold. However, I know I am not the only one that watches their kid like a hawk at these times.

I feel so uneasy when Luke isn't acting like his normal self. Thoughts fly through my mind: hospital stay, oxygen, rsv, apnea. I am not comfortable during these times. If Luke coughs I come running to check on him and make sure he is not choking. It is really bad in a car, I have to pull over to check on him. Then I wonder how bad do I let him get before we once again go to the ER. Now don't get the idea that he is horrible right now, he isn't. Luke just has a sniffled nose with a few clearing coughs. However the thought about how it could progress. Which hospital will I take him to? Will they understand if we want to go to Riley? Just things that are always there. We haven't had the best luck with Memorial Hospital's ER the last two times we have been there. Our new thought is to go to Goshen since they aren't as busy as Memorial and that they are IU Health and might be more open to a Riley transfer if we ever needed it. Sometimes I wish that we still had a tank of oxygen around here. I hated it when we had it, but I feel more comfortable just in case to give Luke a little help. I think I am always going to have a hard time thinking of Luke as a healthy child and not a needy preemie. Normal kids get colds, and normal kids don't need oxygen....but Luke isn't normal. I hate saying that, but right now I don't see him that way. I don't know where to draw the line. When will I feel comfortable with him sleeping all night? I have yet to sleep all night long since we have been home in September. First it was because he woke up. Now though, it is me just making sure he is breathing. Right before I fall asleep I have to get out of bed just to check once more on him. Then, because he is still in our room, I turn the TV down and listen to him breath. If I don't hear anything I have to jump up and put my hand on his chest. Once I'm finally comfortable then I can go to sleep, just to wake up again around 3am to listen and feel just to make sure. I even stare at him when he is asleep in the living room in his swing. I am always checking to see if his eyes look blue around them. There is always thoughts in the back of my head about what I would do if he wasn't breathing. How would I react? I wish I could calm my mind, but I have a feeling I will always be like this no matter how old he gets....sorry Luke, you have a hovering mother.

I pretty much wrote this blog in my head a couple hours ago as I lay in bed listening to him breath, wondering if I am the only weirdo out there. I hope I don't sound like a complete nut.

Yes, We Are Still Here...

I'm sorry to all of those loyal readers, and those that complained due to the long break. We have had a crazy couple weeks and now I think we can finally get to everything. Let's start with two weeks ago. We took Luke back to Riley for his first appointment in months with opthamology. This check-up was to check for the need of glasses. First they checked to make sure that Luke was tracking and following things. I was a little apprehensive about that. I don't think he tracks that great, however, he did great for them. They didn't see any problems with that. Then we sat in the waiting room for 15 minutes while his eyes dilate. The only appointment went quick after that. He did very well. After thinking for all these past few months that Luke would be in glasses since we had the eye problems early one, we were surprised to the learn...NO GLASSES! His eyes look great, and we are free from opthamology for a whole year.

While we were at Riley, we were so excited. We were able to see Lily for the first time in a long time, and her parents too...haha. This was the first time Luke and Lily were able to see each other. Since their areas weren't next to each other in the NICU, they only knew each other from pictures. Lily wanted to play, while Luke was more of an observer. Hopefully Luke and I can visit them in April for March for Dimes. Theirs in Terra Haute is a week after ours and we might go be part of Team Lily. It all depends on the weather and Luke's health.

Now let's move on to this week...hearing aids! We went Monday afternoon to pick up his super ears. They are blue, small, and great for him and a pain for us. Luke doesn't seem to mind them and doesn't mess with them. However, if he is just laying around, they like to pop out of his ears. I am afraid that one of these times a dog might snatch it. I know Luke could hear to begin with, but the aids clear the sounds for him. When I put them up to my ears, they are so clear. They block out the background noise and clear voices for him. There hasn't been and "Ahhaa" moment, but I think he likes them. I just hope they can stay in his ears better the older he gets. We will have to go back every 3 months for new ear molds to be made as he grows. Also, they will also be checking if his hearing changes. There is so many things that these hearing aids can do as Luke grows and different settings for him. As he learns to use them, more can be turned on for him. I will say though, he is cute with them.

Other news...school! To cut to the chase, going to Gary didn't work out. I feel like I was pushed into going back too school right now. I know that I was not mentally ready or prepared for school. Also I know Luke and I weren't ready for the schedule that is needed to finish school. I am working towards moving to South Bend in the summer. I went in for a meeting with them, and I honestly feel like more was accomplished in 20 minutes than in 2 years at Gary. Jonathin thinks that I will be happier here and will get through things easier. Fingers crossed that things work out.

Also...Jonathin and I are now house hunting. We originally thought we were going to buy the house that we are currently living in. However, we both decided that it is nice, but not what we want. So, with Luke and Jonathin's schedule we are currently looking at homes. We don't really know exactly what we want, hopefully it will just hit us when we visit a house. We, however, have seen a few interesting ones. For instance, we did find the house used for the Brady Bunch if you could believe that...just kidding. However, it did smell and resemble it.

This weekend I am scrapbooking with the family while Jonathin and Luke have a boys weekend. This is the first time I have been away from Luke and Jonathin has had him all by himself. So far so good. Luke seems to be having a good weekend for his dad. We shall see how tonight goes. As much as I miss him, it is nice to get away for a bit, and I think his daddy might like it as well.

I PROMISE to not make you wait so long for another update. Hope all these pictures will help with the long wait.

Jordan

Matching Accessories

Luke and Lily

Cousin Time

Oto, Luke's Otter with matching hearing aids, and yes he looks like a rat.

He is ready for the pool

AND.....we're FREE!

On Thursday we packed up Luke and headed to Riley. We had a pulmonary appointment. I went into the appointment thinking that we would stay on oxygen just a little longer at night, because of that wonderful sleep study...if you can't remember here is a look back. Sleep Study = Emotional Mommy Well apparently it wasn't as bad as I thought. We never received any results, so I never really knew what to think about it all. Luke slept 421 minutes of 490 minutes of testing....don't remember that! He also spent 29% of that time in REM (deep sleep) sleep. That is really good according to Nancy. They wouldn't have accepted the test if it would have been lower than 20%. He did drop his oxygen saturation to 81% once, however he was only that low for .04 seconds then brought it right back up. That also took place during the REM sleep. Nancy explained that is where everyone's oxygen saturation will drop, because we are in such a deep sleep. His average oxygen saturation during the whole test was 97%. WOW! I never would have guessed that. He also kept his CO2 right in range most of the time. I guess I could have slept a little easier that night, as long as he did the same. So with those results there was not other option, but to rid ourselves of oxygen completely. No more when we are in the car on long drives. No more at night. I no longer have a giant 50 foot tube running from my kitchen to our bedroom. I no longer have to put patches on Luke's sensitive face. Our bedtime routine has been cut in half. I don't have to worry about the tube getting wrapped around him. I don't have to worry about the tube coming off and him sucking on it at night. However, I know have new worries. I now lay in bed and listen to him breathe when I go to sleep. I want to hear it. I also have to watch to make sure he doesn't put his blankie over his face. Before, I didn't worry as much with it since it is crocheted and he had oxygen just in case. No however I am always checking on him. Instantly Jonathin was ready to move him into his own room now. I am not that ready. For one thing it is all the way across the house. He has a video monitor, but it still worries me. Not to mention he still wakes up in the night when he loses his pacifier and it is easier with him in our room. I know the day is getting closer though. Yesterday I packed up all home medical things and am just waiting for them to be picked up. It took us a month to get our own pulse oximeter and I used it for less than a week and it already goes back this week. I now feel like we can live like a "normal" family now.

Our biggest thing now is gaining weight. Luke has been giving us problems lately on taking bottles. He is supposed to take 20-24 ounces daily. We are lucky to get 15 in him. He just won't take a full bottle. He only eats every 5 hours or so. He has a problem playing with the bottles. We have tried other bottles and we find one that he likes. Then he changes his mind. I have asked if it the formula that he is on. Everyone tells me he needs it because of his prematurity. However, if it is giving him problems, I would rather him eat then not eat. Pulmonary has us watching it closely and are going to talk to a dietitian to see what to do. It worries me that they will make us go back to an NG tube for a bit. I just want him to pull things together and gain some weight. Pulmonary thought maybe he is having some reflux so they put him on prilosec. So far it hasn't helped with him taking more formula. I just don't get it. Hopefully we can figure things out soon. I am at the point where I will try new formula just to get him to eat.

Also, just a quick note. Could I get a few prayers to our friends the Morgans. They are a family we met and I have became really close with while in the NICU. Their daughter, Lily, was diagnosed with viral pneumonia yesterday and have taken her to Riley last night. She will probably be there a few days. Thanks!

Jordan

Would'ya Look At That!

When you see Luke every day you don't really notice the changes unless you look at pictures. Tonight, however, we got some of his preemie clothes out...WOW! I never would have believed it without the proof. 

Luke is now 10 pounds and some ounces. He is wearing 3 month clothes.

This is the first outfit Luke was allowed to wear at 3 pounds 8 ounces. His feet only came to his knees in this outfit. I cried that morning when I walked into the NICU and saw my little man dressed to the nines. He worked so hard to get to this point and now look at him. I would never guess how much laundry this little guy would make, but I'm happy to do it. 

This isn't Luke's first hat, but it is the same size of Luke's IU hat that he wore during the flight to Riley hospital. Like the outfit, I can't believe how much he has grown. 

This was taken right before he was loaded to the transport isolette for his big flight.

I have heard Luke known as a lot of things and miracle comes up a lot. I always knew he was special, and after looking at all we have been through, MIRACLE pretty much sums it up. 

On a quick medical update. This Thursday we will be back at Riley for a pulmonary appointment. I never did hear how his sleep study went, so hopefully we can get some answers then. We also had a meeting with or First Steps coordinator, Liz. She suggested Luke have physical therapy along with the occupational therapy he is currently getting. The PT will work with Luke to catch up to his actual age (7 months) instead of his corrected age (4 months). So this week, we will learn more about that, and how often Luke will have it available to him. We also talked more about Luke's hearing aids. I know the state of Indiana can have problems, but they are good to us now. The First Steps program is available to us due to Luke's birthweight. They cover all of Luke's hearing needs, from appointments to the hearing aids in general. It is just a weight lifted off of us at this moment. Especially since our insurance isn't real helpful at this point. 

We think that we might have finally figured out Luke's tummy issues. Up to the beginning of this week, Luke has been fussy and had almost stopped taking a bottle. Apparently the Miralax that he was given daily stopped working due to low amount of fluid being taken. So we started taking Cultrella. We have to break open the capsule and Luke has to take it with juice. It seems to work fantastic. He hasn't had any crying spells and he is back to eating 4 ounces each bottle. He is also FINALLY regular. The most he has been since we came home. 

I'm not a fan of only updating weekly, but I still hope to get more pictures up soon. 

Jordan

Sleep Study = Emotional Mommy

Last night I could easily say was one of the longest the past few months. I felt like I was back in the NICU on the night where Luke wouldn't urinate and his blood pressure was so low. I had some pre-warning on what was in store for us, however I thought Luke would handle things a little better. He had been sleeping so well the past few nights...that came to a dead stop last night. We check into the Riley sleep lab at 8pm last night and had 45 minutes of prep time. And by prep time, I mean 15 electrodes all over Luke's head, prongs taped up his nose, oxygen nasal cannula on his face, probes on his chin and near his eyes. Don't forget the 3 electrodes on his chest, 2 elastic straps around his chest, two electrodes on each leg, and last but not least...a pulse oximeter on his foot. To hold on the electrodes they had to coban his entire head. He looked like a football player in a leather helmant. He was upset from the very first electrode being placed on his head and never calmed down. He would scream and arch his back. When he finally would fall asleep, it would last for 45 minutes or so, then back to screaming he would go.   To add to the screaming, I was left in this room in the dark with only Luke's heartbeat beeping on the monitor. Also I could watch Luke's pulse ox numbers. I know never to watch the number, but it was like torture. It seemed like a test for parents just as much as for the babies. We weren't able to finally get some sleep till 4am or so. We had to swaddle and elevate his head. He also did better then too. I am not a doctor or know exactly what they were looking for, but he did let his oxygen drop down to 90 occasionaly. It would happen at the same time as his heartrate would slow. It got to be so much in the beginning I had to leave the room and go down stairs for a bit to call Jonathin. I had a good cry, then returned upstairs. I had to keep telling myself that he was fine, and we just had to get through that one night. The good thing, even though he was dropping his oxygen, the didn't have to put oxygen on him. We will get the results in 7-10 days. I am not leaning towards off oxygen completely, but I am just hoping we won't have to do this test again. If we do, Jonathin will be in the room with him. I have never been so happy for 5am to come and neither was Luke. We got home around 10am this morning and slowly Luke is getting back to his old self. He was ready to eat, because once again he wouldn't eat there. He is lounging around now waiting for IU/Michigan game tonight. Hopefully he stays up for it, so he will sleep tonight. Thank you everyone for the comments and prayers for the past 24 hours. It might seem like just a little test, but it really upset me to see him like that. He wasn't himself either. He was a whole different baby. I hope my little boy is back tonight.

Jordan

Starting to remove it all.

Who could sleep like this?

Medical Chaos

Sorry it has been awhile since we last updated, but it has been pretty calm around here...till today. We finally got some answers from our doctors that we have been waiting for. First let's start with pulmonary.
We saw them two weeks from yesterday. That is when Luke was taken off oxygen during the day and turned to low at night. We were ordered a pulse oximeter during that visit along with being ordered for a sleep study. We are still waiting on that pulse ox. Last Monday our home health care called to let me know they were working on things with our insurance and they would let us know when things would change. I then called them on Friday to see if things had changed. Well, they then tell me that they needed our NP's signature or something and they had faxed the paper twice and still nothing came back. So....I then go to call Riley, but they closed for the holiday till Tuesday. I woke up this morning with this on the top of my list, along with scheduling the sleep study since that was never done. Apparently the paper was signed on the 28th, but it takes 7-14 days to process. Which blows my mind, since our friends got theirs the very next day... On a good note, we might not even need it. We were scheduled for an overnight sleep study tomorrow night. So Luke and I will be traveling to Indy tomorrow afternoon. He has to be at the lab by 8pm and they will wire him up. I was told he should sleep like a baby with all of the beeps. Apparently it will bring him back to his NICU days. Hopefully we will be a little early so we can visit our night nurses if any of them are there. I am told that we will know Luke's results in a week. Realistically I should know in the morning, cause they will put oxygen on him if he gets low. Fingers crossed and prayers said it goes well....then no more oxygen!

Another phone call on my list was to the hearing doctors. Since Luke's CT scan we have never heard anything from them. We are getting dangerously close to when they wanted his hearing aids on full time. Right before they called, our First Steps coordinator called to schedule a meeting. We go through them for our special hearing aids also. She said she had never received anything either from the office. So...after finally speaking to the assistant to the doctor we are moving again. Apparently, they never received word that the CT was done and that we were going through First Steps. So we are now scheduled for a hearing aid appointment the first week of February. More balls are rolling now.

Other big news around here...Luke is sleeping in the travel crib. For the past three nights we have been swingless. Just in time for his sleep study. He does pretty well with it. Two nights ago he slept for 11 hours straight. It was crazy! He just needs his two crocheted blankets and he is ready to go. We aren't moving the swing out of our room just yet, but hopefully it is in the near future.

Also the little man is eating like a champ. We have moved from just cereal to some fruits and vegetables. He really likes it. I've been making him fresh food with my baby bullet, and it's pretty easy. You can tell he is getting more hungry and wants more food. He has upped his formula intake at times, but eating 2 servings of vegetables or fruit during his dinner. A far cry from what the developmental pediatrician crying NG tube last month. We have run into some constipation, but we will take what we get.

Hopefully we will have some great news on Thursday morning to pass on, fingers crossed.

Luke's IU overalls

Riah's  reading to Luke with Watson the Raccoon 

11 hour night

Jordan

Cordless...during the day

Long story short...NO MORE OXYGEN DURING THE DAY!  Starting tomorrow morning, Luke will be completely free of any tubes or wires during the day. It might not seem like much, but wow the freedom that is in store. He will still have to wear his oxygen at night and when he is in the car, but not when we are awake and around him. On occasion we will have to spot check him with a pulse oximeter, but his NP was pretty happy with the little man. He also decided to perform today unlike Thursday. He was all about lifting his head to look at us when she asked him to. He also did well eating while we were away and did well in the car. Hopefully things will keep this way since we are back home. We are scheduled to see the pulmonary department at the end of January. Before that appointment we will have a sleep study done. Luke will have to spend the night and one of us will stay with him while the other spends the night in a sleeping room. That will be down here soon. Also, as soon as we are done with oxygen, Luke can have his hernia surgery. It will be nice to cross another thing off our list. So, right now we are relaxing after being gone for nearly 9 hours. I've thrown in a picture just to brighten your day. Luke's Great Aunt Pam crocheted him some cowboy boots and we decided tonight was the day to break them in once we got home.

Jordan

Cereal Testing

After Luke was told he might have to go back on NG feeds we are determined to prove the doctor wrong. Today we started working with a spoon. I can't say it went fantastic, but he gave it a good try. I am ecstatic that Luke actually opened his mouth for the spoon. This is huge to me. All I have heard is how preemies, that were on ventilators, can have oral aversion. He however did well with this originally when we moved to the bottle. I think there was more cereal on his face than in his mouth, but hopefully we can work on it more daily.

Also, after being told that Luke was weak and couldn't hold his head up that is all we have been working on. He has been blowing it out of the water. If we are holding him up, his is looking all around. Hoping that maybe by the end of the year he can sit in his bumbo.

Tomorrow we go back to Riley for a pulmonary visit. Fingers crossed that things will go well. I am 99% sure we will get turned down to .25 liters, however a bigger turn would make me jump for joy. I am just hoping for a good visit and that Luke behaves. We aren't telling him where we are going tomorrow. Maybe we can catch him in with surprise. The good thing is it is only a day trip and we will be back tomorrow night.

Hope for good news!

Jordan

Don't Treat Us Like Failures

I know your wondering about the title, but let me start at the beginning. Today we FINALLY had our first appointment with developmental pediatrician. However, our day started yesterday actually. Yesterday morning we went to our regular pediatrician for Luke's 6 month shots. They went pretty well. The big news was Luke's growth. As of yesterday Luke is 9 pounds 14 ounces and 22 1/4 inches long. He is sooo close to 10 pounds. After the little man's shots were came home to pack for another trip to Riley. It seems like forever since we were there. When we left Luke slept most of the way to Indy. We stayed in a hotel over night since our appointment was at 9am. To put it lightly, Luke doesn't travel well. Sure, he does great in the car, however everything else not so much. To cut to the chase, we were up all night. Every time Luke would fall asleep it would only last a short time, then back to crying we went. He also doesn't eat well. We were lucky to get a feeding in before we left for the hospital. 

At our appointment, I was less than happy when we left. To begin with, the doctor had no idea about Luke. I understand that he sees hundreds of kids, but if you are coming in to talk to a parent at least read the chart. He thought Luke was born in July and came home in August....HELLO! That is how it started. Luke is already uncomfortable and this guy just kept going. Luke's legs are still sore from all of his shots yesterday and this guy is bicycling his legs so Luke is crying so hard that he is holding his breathe. Then he just kept going. He wanted to see him eat. So instead of waiting for Luke to settle down he tried shoving the bottle in his mouth, leaving Luke to choke and cough. This then leads the doctor to just to the conclusion that Luke needs thickening and maybe back to NG tube!!!! What the heck! He said that because Luke was fighting the bottle it wasn't because he wasn't hungry, it was because he chokes regularly! Isn't it funny that speech passed him with his swallow test and he does fantastic at home without coughing or choking. I just sat there and stewed in anger. Jonathin thinks I am getting worked up over nothing. However, I feel like he attacked me and Luke that we are failing. He wasn't too excited for what Luke has overcame and accomplished. I thought the first 6 months were hard, but now I feel like we have a hard couple years a head of us. I didn't go into a lot of detail from today, but I am steaming still. I feel like we were attacked.

So now today we are home and Luke is back to his normal self. Once we put him in his carrier to come home he relaxes and is back to his old self. It is so funny. We get home and he eats all of his food, pooped, and got a bath to get off the hospital germs. He is comfortable and so are we. Hopefully we have better luck on Monday with pulmonary. 

Here are a few pictures that my cousin Bryan ( Bryan Chris Photography ) took of Luke at 5 months. He is too cute if you ask me!

Luke with his cousins Riah, Brenden, and Quin. You would never know Quin is 3 weeks younger than Luke.

Luke looks enthused in his spiffy outfit

Happy 6th Months Superman!

6 months ago today at 9:16 am our life was blessed with a handsome little man. What started as a normal pregnancy took an unexpected turn, however I believe God only gives you things you can handle. What started as a 1 pound 1 ounce miracle is now a bouncing 9 pound 5 ounce baby as of 2 weeks ago. He has slowly moved from newborn clothes to 0-3 months. They are still a little big, but otherwise he is a little cramped. He has begun to hold his head up on occasion and hopefully by Christmas he can be more steady. More and more Luke is noticing things. He is more alert and is taking in the world more. I know this Christmas isn't going to be too exciting for him, but I'm excited for our first Christmas with him.

This week we will finally be going back to Riley for the first time in 2 months. We should have went while we were in the hospital for Luke's abscess. Thursday we will FINALLY see the developmental pediatrician. Hopefully they will put us in the right direction. Our pediatrician here doesn't want to change anything. Hopefully we can start moving towards baby food. I know it won't be right away, but hopefully he can take more cereal. Also a week from today we go back to Riley to see the Pulmonologist. If we would have stayed on schedule we would be working down to oxygen only at night and in the car. However, I'm pretty sure we will only be going to .25 liter all the time. I will be so ready to finally be off the oxygen. He is breaking out all the time from his patches on his face. We are also fighting either an extremely dry head, or cradle cap. He can't decide. 

Hopefully today will be uneventful. He has already scratched himself with those daggers of fingernails across his forehead. He now resembles Harry Potter. Hopefully that is all that goes on. I swear I cut or file his nails every couple days. 

We took a picture of Luke with one of his many giraffes to measure him up. I wish we would have started this earlier. Then I put the giraffe by his giraffe in his room where hopefully we can measure him as he grows up. And yes we know his giraffe only has 3 legs, it matches an alphabet picture in his room.

Jordan