One long trip and some realizations

So I decided to take my 2 month old and my 2 1/2 year old on a state tour stopping to see doctors in Ann Arbor and Grand Rapids this past Wednesday.  My mom has already said "I told you so" in that this was not a good idea.  I in my logical, not dealing with small children in cars thought this would save us 4-5 hours of driving if we did it in two appointments.  I did not think about pouring rain, a very windy day, getting 3 1/2 hours of sleep becuase my baby didn't want to go to sleep, and what would happen when shutting a teething 2 month old and active 2 1/2 year old in a car most of the day would be like.  We made it and we are home.  My mom went with me and at one point only an hour from home we were not sure if we were going to make it.  But we did...I was sick the next day and my husband had to stay home from work to take care of the kids to top it all off.   So kudos to my mom for driving through crazy weather, construction, by accidents, a crying infant and with a Luke that needed suctioning often (mostly due to the weather and dry car air) and by the end was getting upset and pulling on his trach so I was turned around in my seat suctioning him.

So why did we go on this crazy adventure?  We went to a consultation with a doctor about jaw surgery for Luke.  Another Moebius girl we know in our state used this doctor for jaw surgery and our ENT (we share most of our doctors) recommended him.  I really like him and his resident and intern.  They were friendly informative and seemed full of action.  They are gathering some information from some of our other doctors and will be getting back to us with a full recommendation soon.  Luke did pretty good and the doctor got a good look in his mouth while he had his hands in it so we only had to hold Luke down for a very short time for a better look.  Luke does not like medical professionals in the office setting.   He does not care if they are only listening to his lungs or if they are trying to get blood.  It is all defenses up for it all.  And his mouth is one of the worst places you can try to look. 

Then we went to see our pulmonologist, for this first time since sleep study results from July were back.  She did not have full results from the October sleep study, only prelimiaries so we will hear more when they come back.  However, I was thinking that Luke was on the vent at night just for sleep apenea (possibly denial on my part) but our pulmonologist was clear that he still was not breathing adequately at night to be without the vent.  She said that during the day he does good because a different part of his brain (I can't remember which part) can help with breathing during awake time.  When Luke goes to sleep this part shuts off and leaves the breathing to the pons and medela or one or the other.  These two parts are not normal in Luke's brain and have been show in the literature to be abnormal in Moebius people.  She said that his breathing problems are in his brain and that there really isn't much we can do but wait and hope he grows out of them.  WOW, it really hit me that I am looking at Luke on the vent for sleeping long term, but not necessarily forever, and that the trach will be in long term as well.  I do believe God could work a miralcle and things could change shortly but we forge on ahead with long term ventilation for Luke.

It makes me sad as I don't want my baby boy hooked to machines when he sleep and have to breathe through his neck and all the extra care that goes with that.  I want him to be as normal as possible.  I am working on really coming to terms with that but I am not sure I am there yet. 

Luke however, is forging ahead.  He is now pulling himself to stand against furniture.  He walks along the furniture as well.  He is crawling fast all over and is trying to stand on his own.  He did have more stitches due to an accident with his walker, gravity and his glasses but seems no worse for the wear. 

Hannah is 2 months old and doing great.  She is teething (my family teeths early) and so has become a fussier baby.  She is sleeping through the night though, once she gets asleep.  She is smiling a lot and babbles and I think I have even heard her giggle.  She is generally a happy baby and loves to watch Luke do whatever Luke is doing.  She was baptized a couple of weeks ago and all sorts of family came to see her and Luke.  We had a great time.

Here are some not so current pics, but more current than the previous ones...

 

Our Family

Luke exploring his books in a new more accessible location.

Luke is playing on his hands and knees a lot.  Here is is checking out his letters, he loves letters and numbers.

Here is daddy with his kids :)

One of Hannah's many faces

Hannah holding her head up high.

 Luke signing "daddy"

Luke basking in the sun.

Luke coloring.

Hannah - one month

Hannah is a month old!  She is 11 lbs 10 oz and a bundle of joy.   She loves to be held and will very often fuss unless she is being held.  Some good jiggling will keep her happy as well.  She follows voices and faces with her eyes and makes some very cute face.  She is very strong and has been holding her head up from what seems like the beginning but is pretty good at it now.  She pushes off with her legs and her arms with more force than you would expect and wiggles a lot while she is awake.

Hannah - 2 days old

Oh and did I mention she was noisy.  Luke was our first and he can't talk and it took him awhile to learn how to make a good amount of noise with the vent and since the vent was taken off doesn't make noise at all, with his mouth that is, he is really good at noise making with toys.  So we generally were used to a quite baby that would could hear breathe all the time through the vent.  Well dear Miss Hannah has some good lungs and knows how to use them.  She can really squawk and wail as well as squeak and grunt.  She is very noisy and lately it seems she is doing more "talking" to us and calling for us as well as the rest of the fussing.  Luke is not bothered one bit by her wailing.  He will occasionally look at her now if she makes more talking type noises.

Hannah and Luke "playing" together

Hannah is now sleeping in large chunks at night.  Hooray!  She still has trouble getting to sleep about half the nights but once asleep she does great.

So one month into being parents of two kids we are doing pretty good.  We still don't have time for much of anything but we expected that with two small children.

Luke working on standing

A family picture.

Fall and Winter 2009 – 7 to 11 months

Okay just to warn you this is a long post but is separated by month.

September – 7 months


Luke went to GR for an EEG and MRI and some other appointments at the end of September. Luke started with an arm hug (blood pressure) at the Nephrology office. His blood pressure was fine and they decided to keep him off the medicine but still to closely monitor. Very good news!!

We checked into the hospital for the MRI because he needed to be up in the Peds ICU when he got his EEG because of his vent. Luke was put under general anesthesia for the MRI because he is on a vent. He was wheeled into the MRI on time and and it was one of the smoothest moving procedures that I have been witness to. We were busier than busy when we first got there because Luke needed a different trach to go into the MRI since the one he usually wears has metal in it (Neo Bivona Flextend). The new trach did not have a flex end (Shiley) and thus was right against his neck and in his neck rolls. It was hard to keep them vent on and when you put it back on you had to move his little neck rolls. Poor dude. They put his normal trach back in while he was still sedated and that was much better. The anesthesia and MRI went smoothly for Luke and he seemed fine. He was a little restless that night, but who can blame him with everything going on, and the doctors decided to start the EEG right after them MRI even though the sedation was still in him. We were supposed to wait until Tuesday morning to start the EEG. We started hearing we were leaving on Tuesday instead of Wednesday. I of course freaked because I had a pulmonology appointment on Wednesday afternoon that was very hard to get. And this would give us the problem of having to be in the Runcci house with Luke overnight again because we didn't want to go home and come back for the appointment, way to much driving (3.5 hours one way). So I called Kevin and he brought the crib and humidifier with him. On Tuesday morning when it seemed for sure we were leaving that afternoon I called pulmonology and God was working, we were able to get an appointment for Tuesday after the Cystic Fibrosis clinic. So we may have to wait awhile because the clinic usually runs late but we would get to head home on Tuesday evening!!!
Pulmonology said we were doing great! We are going change his rate to 8 (down from 20) during the day next week and then in two weeks we will call them and let them know how Luke is doing. Assuming Luke is doing well we will take him off the backup rate during the day all together! They said it is usually three months on the Pressure Control and CPAP before turning him down more. However, we will see them in two months and discuss our options then. I am thinking Luke man will be doing fine and we will continue lowering settings then. They also decreased his dose of the only medicine he is taking all the time! We will stay on this dose through flu and RSV season though.

And great news! No Grand Rapids trips in October! Our first month with no trips. We have two November appointment days where we fit all our appointments!

In late September Luke's MRI results came back as normal which is good. This means there is no evidence of seizure activity, the fluid collections he had as a newborn are gone and that the nerves are present they are just not functioning correctly. In early November we finally got word about the EEG which showed no seizures and everything as normal.

Luke has been doing lots better with his gross motor skills. He has never really been behind in fine motor skills especially with his hands. Luke now holds his head up and sits up with just a lit bit of help. And today he even sat on my lap facing me with no help. However, I can't get him to sit up by himself when he is not on my lap. He is now pushing up with his hands when on his tummy instead of lifting his head totally with his back muscles or however he was doing it. He has even rolled from his back to his stomach (with the bar braces still on his feet) except for one arm. He can't seem to get that bottom arm around by himself and he yelps for help when he gets too frustrated. He is also very good at moving around by bending his legs and pushing his bar on the ground and the lifting his but up and moving his upper body around. Luke is still getting help from physical, occupational and speech/feeding therapists which is good. He is still signing but isn't full tilt with it yet and some days is all about signing for things and other times not. He does babble with his hands like some babies babble with sound. Even with the trach Luke does make sounds that are really cute but he has now added frustrated grunting to the mix. He has so many things to be frustrated with I don't blame him. He does sign and vocalize when he is not being fed fast enough for him which we like because then we know what he wants. Luke is over 17 pounds and is 26 inches long. Sometimes I look at him and he just looks so big. All in all Luke is doing very well and is a fun cute little guy that seems to steal hearts wherever we go.

October – 8 months

October started with a trip to Grand Rapids of all things. Instead of getting a month off, we made a unplanned visit to get Luke's g-button replaced. The valve on Luke's g-button we use to feed him broke and he every time you put his feeding tube in our out he was loosing a lot of stomach fluid that contains important nutrients and this is very very messy. He now has a Mic-Key button (18Fr 1.7cm for those who want to know) that we can replace ourselves (and have replaced many times). This feeding tube on this button locks as well which is nice. However, the valve is open when you are feeding Luke so that instead of things only going in they can go in and out and out out out the top as we have found out lately. No leaking stomach juices though.

October also started a long couple months of sickness for Luke. :( Luke had been very "junky" (has lots of secretions out of his mouth and nose and from his trach) lately and the pulmonologist had us take him into the ER for an x-ray and culture. I thanked God that his lungs were clear clear clear and he only had an upper respiratory infection. No x-ray needed but a culture was taken from his trach secreations and in 48 hours we would know if he had something more serious. He was also put on increased Atrovent and Pulmicort, two medicines to help him keep his lungs clear. Luke seemed not to be too bothered by all this and was still fighting sleep at bedtime and naptimes.

As I wrote notes and updates about Luke on Luke's CarePage many people asked "How is Emily?" So this is what I wrote. “I am doing well. I thank God for the outlook he gives me and my ability to just roll with the flow more than I ever used to. There are so many parents I talk to who are really scared and worried about procedures and come ask me about them because Luke has had them. I don't remember feeling that scared or worried. I don't want to sound like bragging or like I am better than anyone else. I just think God (and thank him) has given me this peace about things. I am one of those who questions questions questions and I still do that. But there were a lot of things with Luke that I just accepted and accept and keep moving. His trach and g-button surgery were not huge worrysome events for me (Or maybe I am just forgetting my worry) but I just feel okay with things going on with Luke. I may wish they were different or hope things move faster with healing than they are but generally God has just let me be with who Luke is.

I am a little in your face about washing your hands before touching Luke and washing all his things. I am working in baby steps to be better about this. I am doing a lot of praying and handing over again and again my worries of Luke getting sick or really sick to God. My biggest struggle right now may be having people in my house all the time. I know I need them and they are great nurses but it wears on you to have someone in your house everyday.

So far I am not going stir crazy about getting out of the house. I think I may be a closet homebody. I struggle when I am away from Luke for any length of time and at the same time struggle to want more free time.”

Now, almost 2 years later, I am getting a lot better about the germaphobia things. I am lots better in our house but still am pretty careful with Luke when we are out in public.

November – 9 months

November started with Luke is doing better, not back to normal things were looking in the right direction. I had a tough first week mentally with Luke still being sick and earlier that week he didn't seem to be getting any better and all the doctors were telling me was to keep doing what we were doing and that it could take 8 weeks. Yes I said 8 weeks for Luke to get back to normal. I am not a patient person but dealing with Luke's medical issues has definitely helped me be more patient. However, by the end of the week I was better and Luke was getting better. He was sitting up really well and propping with his arms while sitting and on his tummy. Another sign he was getting better was that he was willing to do tummy time for the first time in a few weeks ago without throwing a fit. Luke is more alert to people and things and is exploring more of his environment. He even discovered that his vent tubes can be a toy when he had dropped all his other toys. He grabbed onto his vent tubes and was shaking them. It was a portion that was up higher and so he didn't actually pull them off but it was pretty funny. Also, during this time he started to pull his vent tubes off and hold them in his hand, sometimes making it so that the air coming out of the tubes was blowing on his face.

This week Luke goes to the orthopedic doctor and his Ponsetti brace wearing hours went from 23 hours to 12 hours a day!! It was great to see his little feet at last, and he gained freedom he hadn’t seen in 6 months.


Luke's recovery was short lived and we were in the ER on Saturday and then again on Sunday night with Luke on 1.5L of oxygen (way high for him) and needing lots of suctioning. We ended up being transferred down to the Children's Hospital in Grand Rapids by ambulance on Monday morning. Our local hospital will not take pediatric vent patients so it wasn't even an option to stay and be admitted there. In the ambulance, for the first time Luke put his arms up for me to pick him up and it was very hard for me because I couldn't pick him up as we were driving down the road and he was all strapped in. Poor baby. This was our first major sickness outside the NICU and because of that we needed to be admitted. We found out Luke had tracheitis (an inflamed trachea), like bronchitis but up farther in the trachea instead of down in the bronchial tubes. Luke has had tracheitis since and we are able to treat it at home. While we were in the hospital our pulmonologist even told us that once we figure out how Luke responded to medicine then she was fine treating him at home. By Tuesday Luke was much better but the docs wanted to keep us in till Wednesday morning to make sure Luke stayed well on 24 hours of meds that we would go home on. This trip gained us a lot of Luke experience. We learned a lot about him and I learned that there needs to be two full time people down with Luke. My mom helped a lot but she worked during the day and I didn't sleep well enough in Luke's room at night to take care of him 24/7. I don't feel comfortable with Luke in the hosptial, even the PICU, and nurses who do not know him not in the room and monitoring only his stats by screen. Especially at that time Luke needed suctioning and other things usually before his stats really showed it. So I did not and will not leave him alone in the hospital. Luke also started making noise again and “talking” to us. He had not done this in awhile since his trachea was inflamed and we were happy about him being on the road to recovery for real this time.


As Luke got better he started rolling from his tummy to his back all by himself. We also saw the geneticist to make sure Luke didn't have anything in addition to Moebius. Our opthomologist still worried that we had something in addition since the Moebius people he had dealt with did not have the problems Luke did with breathing. Well the geneticist said he just had Moebius, that all his symptoms fit within the Moebius Spectrum. She also said she believed that we didn't have but may a 1-2% higher chance of having another Moebius child than the general public. Yeah! (We not have Hannah, who does not have Moebius.)


Luke has his first Thanksgiving over at my parents house with lot of family and friends to entertain and love on him. He had lots of fun and was very warn out by the end of the day.


I always planned on babywearing, carrying your baby in a wrap or sling, and I started putting Luke in the Moby wrap with the vent on my back or sitting next to me. He loved it and I loved having him close. It also helped him calm down and sleep during a lot of the holiday festivities when he was over stimulated.



December – 10 months

Luke took his first visit to the dentist, who actually got a look in his mouth! He told us to come back for a cleaning when Luke could open his mouth more and would allow him to get in. This hasn't happened yet and I he may need to be put under if someone really wants to clean his teeth. I am hoping that the oral motor and sensory therapy we are doing will allow us to take him to the dentist next year.


We had some problems with Luke's tummy this month. One day he became very lethargic and his button got tight. By the end of the day he was so bad that we took him to the ER. The ER docs called the surgeons who put the button in and they gave instructions through the ER doc and Kevin and I took his button out and a volcano of stomach juices and ickyness came out. We put the button back in and cleaned it up and Luke instantly became his normal self again. They said that sometimes with a Nissen (this makes it so food and liquids can't go up the esophagus easily) it is hard to remove air and pressure can build up especially if something irritated the stomach. So, once the pressure was relieved he was as good as normal. Here we had another Luke experience under our belts. Things never got this bad but many times in the following months we removed the button and released pressure and let things drain. We are not truly sure what caused this but after a few months it seemed to go away and it hasn't been a problem since.


Luke also started having these weird episodes at night where he would continually high pressure. Usually he was alseep but obviously uncomfortable. Holding him would help for maybe 30 seconds and nothing seemed to really make the high pressuring stop. Luke having a high pressure is like him breathing out really hard, or a big sigh may do it. In this case he was obviously not aware. We didn't know what was going on but his stats and everything else seemed fine. Very weird.


Luke saw the neurodevelopmental team again and they thought he was doing well and progressing along nicely. He was not where he needed to be for his age but he was always making progress which was really good they said.


Luke experienced his first Christmas with more family and friends. The whole Calhoon clan even came up for New Year's to meet Luke and of course they fell in love with him.



January – 11 months

A month with lots of doctor visits. At pulmonlogy (the lung doctor) we got answers and changes. Luke is weaning full force again. He had stopped weaning when he got sick in the fall and I was very anxious to get moving again. He was on a backup rate of 12 during the day (20 is where he started and he had to get to 8 to go to the next level of weaning) for 2 weeks and then we would do 8 for 2 weeks and then call to talk about the next step. Luke was teething and had a lot of secretions because he just doesn't swallow well enough and I was afraid that would slow things down but fortunately it did not.

Luke secretions were a bit thicker and a little on the yellow side so they did a trach culture to see what is growing and we will know the results Monday. My dad thought the thicker could just be all the dry car air that is blowing through as it super heats the frigid temps. Luke had been downstate 2 times the week before. As time has went on we have noticed that Luke's secretions are very sensitive to the weather and his environment (car vs. house).

Luke was still having some episodes at night where he couldn't catch his breath and more but we couldn't figure out what they were. The pulmonologist had an immediate answer for us... Reflux. Some stuff goes a little but up from his stomach (can't go far because he has a Nissian which doesn't let things go up from his stomach) and triggers the Vagus nerve which also has a branch by the lungs and triggers bronchial spasms (go nurse Keri who was right on about these) in preparation for the aspiration it thinks is coming, but does not. Luke was put on Zantac but we were told it could take up to 8 weeks to really be effective. This was a relief as these episodes were weird. However, looking back I am not sure it was really reflux. Whatever it was he seemed to just grow out of it because the Zantac didn't seem to really change anything.

We are also working on taking a feeding out and so Luke will be to 6 feedings a day. After that we started adding puree foods to Luke's diet, you can read more about this in my blogs about Luke's blenderized real food diet.

At the ophthalmologist office Luke got a lower prescription on his glasses and they thought he was doing really well. He does not have any corneal sensation which worries the doctor. This means things can touch and possible scratch his eye and he does not even know it.

When we went to pick up the glasses I had a momentary freak out moment as the optometrist put some alien green glasses on him. I said "no thank you" can you just put the new lenses in the frames he has. So thankfully we left with a cute Luke in white glasses.

Luke was quite the chunk. He was 21 lbs. 4 oz. and 27 inches.

Hannah and Luke

Until a few days ago Luke basically ignored Hannah, even her loud crying very near him.  But in the past few days he has been pointing to her and signing "baby" more.  When we were going through letters the other day he was telling me some things that start with the letter we were on and when we got to "H" he pointed to Hannah.  We have been telling him Hannah's name by signing and "H" and jiggling it like we sign an "L" for Luke and jiggle it.  

Today he took off his HME and threw it into the bassinet things she was sleeping in.  I am not sure if this was purposeful or by accident but pretty funny.  Things haven't been all good.  The changes in our household have been apparent in negative ways as Luke has pulled his trach out twice in since Hannah has come home.  We have also had some long trying periods of time outs due to trach pulling.

Generally things are going well.  I still have helpers to lift Luke so we will really see what happens when it becomes 1 adult/parent to 2 kids in a few weeks.

Luke's Story – 3 ½ to 7 months old – First Summer

Luke's first months home were busy and full of adjustments. Luke came home on May 20^th and we had a busy summer ahead of us. We loved being able to be in the same place as Luke all the time. We did have to get used to being confined to one area of the house with Luke because of all the machines he was attached to. At some point we got ourselves together and had a regular set up with his vent and suction in the living room and just moved the pulse ox and apnea monitor when we moved him. Still this only afforded us really two places to be with Luke. We did get him loaded up onto his Kid-kart (a stroller with a lot of carrying capacity for his vent, suction, vent battery and monitors) and took him outside a few times for a walk around the yard. He fell asleep the first time out but the next time he was awake and right away liked to touch trees and look at everything. We live in a swamp (a forested wetland) and there is lots of nature to see. Luke still loves to touch leaves, needles and bark and constantly signs for more when we are outside.

Between Luke's appointments for casting to correct his clubbed feet every week and seeing our other 9 specialists we were in Grand Rapids (GR) at least once a week and two months after being home we were there three times in seven days with a night of no nursing in the middle. It was a pretty crazy summer. Grand Rapids for us is 3.5 to 4 hours away depending on stops to change diapers and other things. Luke did great and was a pretty mellow go with the flow baby which was awesome! He did get fussy sometimes which worried me but then my mom reminded me that he is a baby and babies fuss.

We saw the pulmonologist for this first time about a month after coming home. I was pretty nervous because I had been having a hard time effectively communicating with her in the NICU and I was pretty set on starting to wean Luke off the vent as I thought he was doing wonderfully. The pulmonologist said they like to wait for two months of being home and stable before weaning but allowed Luke's PEEP to go from 6 to 5 on that first visit. We communicated wonderfully and I was feeling good about our future relationship with this pulmonologist.

In June Luke also saw the Neruodevelopment team which consisted of a physical therapist (PT), Occupational Therapist (OT), speech therapist, nurse, social worker, and a doctor. It was a long appointment but they gave us some good ideas about how to help Luke get strong enough to hold his head up on his own. (Luke was 4 ½ months at this point). We also were getting the process started to get into the Early On program with the school system and get a PT and OT to come into our house and do therapy with Luke. We were working off of the PT and OT suggestions from the NICU and were excited about the possibility of help on a regular basis. We ended up with an OT, who did some PT as well, coming about once a week. We had PT 1-2 times per month and speech therapy and vision therapy each once a month. I liked all the therapy because it helped Luke get used to other people, gave me new ideas for therapy and kept me more accountable to work with Luke.

At the end of June Luke had a GI bug and a possibility of some seizures that the nurses had been seeing. We had and still do have nursing 12 hours every night. Neruodevelopment scheduled an EEG for one of the next times when we were down in GR. He didn't have any more seizure activity before the EEG and the EEG came out normal. You don't always see seizures on the studies but the doctors still decided to wait and see if he had more before treating with medicine. The doctors were reluctant to use seizure medicine because it can be a long term medicine once a child is put on it. I was okay with this as I am not a medicine person and Luke had so much other medical intervention I hesitate to add more.

Luke is very “talkative” as he has learned to make noise over then vent. He really has only one or two tones but we love to hear it. It is very cute. It is also a way to judge how he feels because when he gets sick and doesn't feel as well he doesn't make as much noise. Since he doesn't have facial expression this was a good indicator for us when he was little. Since being taken off the vent during the day he doesn't make noise. With the vent he had something to push against to make the noise and with just the trach that isn't there. We miss the noise but not the vent.

Luke LOVES to look at his hands. He is amazed by them and he does all sorts of things with his fingers. He pinches his thumb and first finger together and is just really cute about it. He likes to play with and bat around his cloth blocks and other toys in his crib as well as his mobile.

At the beginning of July Luke had his first blue episode at home. I woke up when the nurse called me down. Luke had turned blue and she has used the ambu bag to bring him back. By the time I got there he was very pasty and pale but awake and alert. He fell asleep shortly afterwards for about 15 minutes and then woke up ready to go like nothing had happened. I called the pulmonologist to let them know and they wanted us to go the ER to have him checked out. They did x-rays and blood work and found nothing. I think Luke just got some water down his tubes. In the hospital he had a lot of episodes where he turned blue and his stats dropped but we got him back fast and easily. We couldn't conclusively prove it but were pretty sure there was too much water from the humidifier in his vent tubing that would build up and flow down into his lungs sometimes. In the hospital we had notes on his crib to keep his vent tubes flat with no places to collect water to try to prevent this. We also turned the temperature down on his humidifier so the difference between the air and tubes would be less and thus less condensation would happen.

Also, during this same time a nurse saw another seizure which we were going to talk to the neurologist about when we saw him a few days later. And Luke had a head cold as we were pulling yellow/green stuff out of his nose. Thankfully this stayed out of his lungs.

When we saw the Neurologist they wanted us to get a 24 EEG and a MRI to try to catch a seizure and see what was really going on. Getting an MRI would mean Luke would need to be sedated and a different trach would have to be put in because his current trach has metal in it. We would do the MRI and EEG in the same trip and spend a couple of days in the PICU at DeVoss Children's Hospital. We needed to be in the PICU (Pediatric ICU) because Luke is on a vent and thus considered fragile. These were scheduled for September.

By the middle of July we were in the normal swing of things again and got his third tooth! Luke is now able to sit up (with help) and hold his own head up. We are still working on the head control when he is on his tummy though. His hand control gets better and better all the time and he is really into shaking toys right now. He figured out that he can make his mobile move by shaking the rings we have dangling from a line across his crib and through the mobile. All this shaking and noise makes it easier to tell what he is doing when you are not right in the room with him. He has fallen asleep with his arm in the rings and was even moving them in his sleep.

A bad thing that happened was that we lost our 3 days a week nurse. This was a large portion of our nursing and took us totally off guard. It happened right before she had 3 out of 4 days on. There were a lot of not so nice phone calls and some lost sleep but a nurse already with our nursing company stepped up to fill in, temporarily at first but then she fell in love with Luke and decided to stay and is still with us :)

At the end of July Luke was finally done with his every week castings and his Achilles tendons were clipped and casts were put on for a final three weeks of casts. During his castings Luke had started with plain plaster casts, which is normal for castings to correct clubbed feet. However, Luke spent his days banging his casts together and broke through them so had to get them reinforced with fiberglass. The fun thing about this was that he got to get a different color cast every time. The tendon clipping was met with lots of crying and as much soothing by me as I could do and still have them be able to do the procedure. After all the fuss he was asleep before they were done casting. After three weeks the casts were cut off for the final time and Luke was free. Well almost free, he now had sandals attached with a bar that turned his feet out. He will wear the sandals and bar 23 hours a day with only an hour break for at least three months. The first day with theses on was very trying and I have never had Luke cry so much. It was very hard for me to go through but fortunately I had my mom to help me out that day and she helped a LOT.

The casts came off just in time for his baptism which was his first trip to church. We had Luke on a look but don't touch plan at church, and he still is. Yeah maybe I am a little crazy but there are a lot of people handshaking, eating, coughing, ect... at church and then exchanging it with everyone else. Luke was serenaded with a baptism song by my mom's drum group and he was baptized by my dad and our pastor.

Luke's July visit to the pulmonologist went really well. I was prepared to have to ask to have him start weaning and the doctor came in with a plan in place to start weaning Luke the next day! We were going to start by lowering his back up breath rate by two every two weeks. Also the nutritionist, who I thought should have increased Luke's food at the last visit came in with an increase of food at this visit. So good all the way around! Through all this I was pumping breastmilk for Luke. So some days all I felt like I dealt with was food, either pumping it or feeding Luke.

Luke's first visit to the ophthalmologist gained him a pair of glasses at just 6 months old. His Moebius Syndrome lends him to have crossed eyes which is compounded by finding out he is far-sighted and far-sightedness lends itself to having crossed eyes as well. The far-sightedness is not from Moebius Syndrome but is genetic and from my mother, who had glasses at 11 months. Luke got the cutest little white framed glasses. Thankfully they were made out of a silicon with polycarbonate lenses so basically baby proof. And he looks so cute in them. He doesn't pull them off his face and in time he started putting them back on his face correctly when they accidentally came off. However, when upset he will grab at them and pull them off, but he usually tries to put them back on soon afterwards.

Our first summer with Luke was quite eventful and at the end Luke was down to 10 on his breath rate, had new glasses, done with casting and onto the Ponsetti brace (bar and sandals), holding his head up, and just being an all around cute baby.

So I just remembered some more things about that time for Luke.  First, he started signing!!  I think his first sign was "milk" and he did "diaper" and "suction" pretty soon thereafter.  We started teaching Luke sign since he can't talk and between the trach and Moebius Syndrome facial paresis we were pretty sure it would be awhile.  Currently Luke is very talkative with his sign and he babbles and makes up his own signs.

Also, after Luke was done with all his surgeries they found he had high blood pressure.  The Nephrologist's working theory was that the high blood pressure was due to some acute damage to the kidneys from his umbilical catheter that was places at birth and in for a few days.  He was put on high blood pressure medication and his blood pressures were monitored at home by nurses and every time we could get to their office when we were in GR we got a blood pressure.

Luke is a big brother

Hannah was born on August 3rd making Luke a big brother.  Here Luke is pointing to her nose.  He has done fairly well with her so far but is mainly ignoring her I think.  He does like to count her fingers though.

Latest Sleep Study Results

Luke had another sleep study in July that showed he had significant central sleep apnea.  Central sleep apnea is usually found in people with neurological conditions, which Moebius Syndrome is and it doesn't really sound like it can be "cured" per say like obstructive sleep apnea can  by just removing tonsils or adenoids or something.  So this means Luke needs to be on the ventilator while sleeping for the foreseeable future.  Disappointing to hear but it is the best for Luke.  We did change his vent and oxygen settings, not better or worse just different.  He is now on a breath rate of 20 with a pressure control of 20 (we have been at 10-12 here in the past).  We didn't change the PEEP at 6 and the pressure support at 10.  He is on less oxygen, 0.3L instead of 0.6L.  Right now we are waiting for the results of a over night pulse ox download and a venus blood gas (to look at CO2 levels) and if they turn out good we will repeat the sleep study in 3-4 months and see if things are improving with age.   The new vent settings are doing really good things for Luke right now as the volumes of air going in and out of his lungs has doubled, a very good thing.  So I pray that Luke would grow out of this, if that is possible or God would heal him of it and he could get off the vent.  My feeling right now is that we have the vent and thus trach right now to take care of the sleep apnea.  I don't know all that much about central sleep apnea and all the ins and outs and what is really means for Luke but I am sure I am going to learn more over the next couple of months.