Lua's 4th Birthday

March ties with October for being the worst months of the year. At least the first half of the month is just terrible. In the beginning of the month of March, each day it seems like I wake up with this lump in my throat where I could burst into tears and become an emotional mess at any second. This year I have been pushing it back and pushing it back, keeping busy and trying to ignore this week that is ahead. 

Four years, my biggest memories from four years ago are being very pregnant and just finishing up with my uncles benefit. For me, those two events go hand in hand together. In fact, I think my uncle messaged me the day I went into labor with Lua, we were joking about how it was time to set the eviction date for the baby. No one could have ever been able to guess what ended up happening. There was no sign anywhere that our baby would have any complications. Our first baby was a horse, as healthy as could be, why on earth would anything be wrong with our second child? I guess because that is how genetics work? Some times conditions pop up that have been possible to happen for generations but people before us lucked out, generation after generation. Then finally, it happens, and the mutated gene that has been being passed down and passed down finally shows its ugly face to the very unfortunate family who gets it.

I can go on to say but we were so blessed, we Were fortunate, we were the lucky ones, all to be able just to meet Her. All those things are true, but it doesn't take away how much it hurts to watch your baby struggle with everything in life and then pass away. I'm not a strong person because I handled all of it, take care of her, and the rest of our family, and try to live this normal life. No, that doesn't make me strong, that is me being forced into doing what I had to do because I wasn't given a choice. I don't know what that is considered, but that isn't being strong. I mention this because everyone always tries to give you the bright side when things are horribly bad, and sometimes there isn't a bright side to a situation, sometimes the situation just sucks. I believe it is human nature (to quote daniel tiger) to try to turn things around and find something good, but this situation was just crappy for everyone involved, and it hurts when people say we have been so strong. I didn't want this and I don't want to be strong. 

Every year I think I will be able to handle her birthday better than the last, but then the week arrives and I am just as bitter and sad and mad/angry and anxious and hurt as the day she was born. I'm starting to think, maybe that just doesn't happen, maybe it isn't possible to take the day your beautiful daughter, that passed away, was born, and see it as a time to celebrate. Maybe I'm wrong, maybe many years down the road I won't have all these feelings, because I can admit, I do know the benefits that came from Lua. I would never deny that her birth was meaningless, that I regret it and wish it would have never happened. I know the beauty that came from it, but the loss hurts so bad I have to work very hard to keep the beauty part of it ahead of all the bad.

I know today what she accomplished in her short life, she lived and died to give her brother a great life. With out Lua, we would have never known the path we needed to take for Sol. If Lua was here, most likely there wouldn't be a Sol. I think that is why it is so appropriate for them to be named moon and sun. What is the moon with out the sun? What is the sun with out the moon? They needed each other even if it wasn't in this life together at the same time. Lua passed away at 7 months from a cold, from inflammation to the lungs, because she was not getting the air way clearance she needed and she wasn't getting the proper ventilation support. Sol is now 26 months, triple the age Lua was when she passed. Every time Sol is sick or something seems off, we think of Lua and we remember, we aren't doctors and if we are in doubt, he needs to be seen. It is horrible that we had to learn the way we did, but this is what she has given us. We don't know Sol's future, much like we don't know our own, but it is because of the struggles we had with Lua, we found the correct doctors for Sol and he has not made it to just his 1st birthday, but also his 2nd which in a condition like theirs, is a great accomplishment. 

I also know May's great accomplishment in life already too, and that was loving Lua more than any sibling could love another. May was the best sister to Lua the world will ever see. I mean that too, I know it is easy to say that, oh so and so loves their brother/sister the most! But, she loved Lua literally to the moon and back. Even to this day. At times I envy May, she has the most genuine memories of Lua. She remembers all the good times and that she was her sister and she was SO happy to have a sister. She does remember mom and dad crying a lot but other than that, she doesn't remember that last morning, she doesn't remember seeing Lua's body lifeless, she remembers her smile and her eyes and that she got to play barbies with her, and for a short time she had the sister she always dreamed of having. I overheard May telling some friends that came over one day about the picture frame in her room that holds one of Lua's outfits. She explained to them that it was her sisters, but she died when she was a baby and it was just the most honest thing, and she could do it as though it was something common that happens. Life through a child's eyes I suppose.

None of this came with out consequences though. May does remember good things about Lua, but she struggles with anxiety frequently, maybe she would have regardless but it probably is a little worse than what it could have been. Also having Sol, and her being older and understanding more, she is more aware how fragile his life is and will frequently ask if he will die. We have all been opened up to a new world that is out there that you will never really understand or see unless you yourself are living with a child who is medically fragile. We hear about kiddos passing away a lot, and it is always so heartbreaking because I know how those parents hearts are feeling and I ache for them as they have to go on this new journey that can be so isolating. We keep moving forward, though, because we have to. Which is why, days like Lua's birthday or the day she died are so difficult. Time seems to stand still on these days, these days where intentionally or even unintentionally give the what if's. What would life be like right now if this didn't happen four years ago? How would she be? How would she look? Would she have had those terrible three's like her sister? Would she like Daniel tiger as much as her brother? As soon as those questions come into my head I try not to even indulge them and push them out as soon as they come because I can't even bare them anymore. I went from having to see her pictures and videos every single day, to not even being able to go on my downstairs computer because I know that is where all her pictures are and for some reason this new part of grief that I am in, I can't handle seeing her pictures.

She deserves her day to be recognized, though, I gave birth to her, she was here, she lived, she fought to live, she conquered things doctors said she would never do, she definitely taught us, me, a lot. My only wish... is that it wouldn't be so painful. 

2018 genetics updates

I'm pretty bad at going back and reading previous posts, sometimes they annoy me so much I can't imagine anyone wanting to read these things 😃, but I did briefly go through the post on Sol's neuromuscular clinic, and that reminded me...

Shortly before Christmas I got a call from genetics about the testing they did on Sol's plec gene. When we originally did this test that found changes in the plec gene, it was through a research based program so we didn't have to pay an arm and a leg for it. It was also done on Lua, so now with Sol, and that he is still with us, we were able to clinically test the plec gene and what they found was that the change in the plec gene was actually in the intron part of the DNA not the extron. There was a lot of explaining going on, but basically if I understood right, they aren't sure what the introns part in genetic conditions are so when they do studies like this they dont count the intron as being the cause, only if it is on the extron. What that means is, they came to the conclusion that the plec gene IS NOT the cause.

Now if you read the past posts, we were excited that at the muscle clinic they strongly believed it was the plec gene, and they had two doctors currently working on the plec gene, which meant possible gene therapies....... So nevermind all of that....  now we are back to square one. The condition my kiddos have remains undiagnosed. This even comes after they did another genetic test looking at neuromuscular conditions. Those results came back not too long ago and they did find a change on two genes that could be responsible, but there was only one change on each of those genes, one was Titin gene, the other I can't remember off hand but either way they don't really believe that either of those are the cause. I remember the titin because what that showed was dilated cardio myopathy which if this is true, he may have heart issues later on but thankfully we are already watching his heart and he will have a full work up on his heart later this month. That doesn't explain the rest of his condition though.

It is so very frustrating, with out a reason for the condition, a cure or help is just that much further away. Currently we are going to try to enroll in a program that works with people who can't be found a diagnosis, if we get chosen for that then a scientist would work with Sol in hopes of finding what gene was changed. It will be a long process, I have no expectations of finding out what he has anymore. I thought we were really going to be able to figure it out, but there are too many unknowns. Too many genes they haven't learned enough about, and not to mention part of me still thinks there may have been an environmental factor at play with Lua and Sol, although the geneticists don't really think that is possible but they aren't saying it was impossible either. By environmental I don't mean like smoking or drinking or some other type of ingested abuse or what not, but the place we were living at the time when Lua and Sol were both conceived.  What we do know, is it is a type of myopathy and we will continue to treat it as such. We don't know any thing long term, just go day by day and hope for the best! 

Santa is coming to town

Or well rather we went to Santa...
Last night we made a spontaneous trip to see the celebration of lights, which happens about 40 mins away from us. We went the first time when we first moved to this area, I was very pregnant with Sol, and neither of us can remember how we knew about this but I think it was one of those deals where we just stumbled upon it, even if everyone else in the area knows about it. Anyway, the last three years we have gone to it. It is nice because you can drive through the park and see the light display, I think you can walk it but most drive it, which works perfectly for our family! Then in the middle they have a building set up where you can see Santa. The first year we went, we probably waited in line for a good 20 to 30 mins, mostly Outside, in the cold, in december. It was awful. May did enjoy it though, because that year they had the deer out back that we could look at while we waited. Last year, Sol was just recovering from being sick when we went, and there was no way we were going to wait in line with him for that long in the cold. This year, we went on a night that wasnt free so luckily we didn't have to wait! So we were able to do that famous picture of the baby crying while being held by Santa... It is the little things that happen that help you feel like you are doing the whole normal family thing.  This picture is my favorite! 

This picture reminds me of a similar picture his sister took at his age, or well I suppose she was a little younger than him. But I love it! 

Sometimes it seems silly to want those typical moments with our family, we aren't a typical family so it shouldn't be something I have the need to dwell on, it is unfortunately, but many times we never really do get those typical moments anyways, so when we do find ourselves stumbling upon them it gets pretty exciting!
This year has definitely been a better year than it was last year. Sol is getting a little easier to do things with and he is getting stronger, which makes everything better. Sometimes it hurts to see how well Sol is doing. That confirms what I thought with Lua, if she were to have gone to madison she would be doing just as well as Sol. I try to quickly get out of that mind set, although, because I know it still doesnt take much to send Sol to the hospital or maybe make it so he isn't even able to make it to a hospital. I am just so grateful for this year and all of his accomplishments and his hard work. He is one determined, feisty, opinionated, little dude and I love it. I never thought he would take so much after his sisters! Especially that oldest one there!   

Neuromuscular clinic 2017

Last year was our first year at this neuromuscular clinic which includes Many many many doctors, that we get to see all out of one room. They come to us and we get to just hang out in a clinic room. It is perfect for us so we don't have to keep going to Madison over and over, and also because then we don't need to pack everything up and run to a different doctor through the day. Last year's clinic was really great, gave us a lot of ideas and updates as to where Sol is at and we got new doctors in the picture at last years clinic. This year also did not disappoint us! It tends to be a very long day, with waking up at 5 am, (after going to sleep at 3 am because Sol decided to not sleep the night prior >.<) and then not getting home until after 6pm. Whew, but it was worth it this year.

We are starting to have a really solid understanding as to what Sols (and Lua's) genetic condition is/was, which is great because we know better how to treat it. There are still a lot of unknowns, technically speaking, Sol, well technically technically Lua, is the first to be seen with this type of mutation creating this type of condition. Lucky Us! Other kids that have been seen with similar mutations in this gene have a much less severe type of the condition, meaning, many of these kids have gone on to walk, didn't require a trach, had more movement, but still they believe what we saw in our kids is the same thing that has happened it just happened to be worse, probably simply because of how the specific mutation in each of mine and my husbands genes came together.

Yes, it is annoying and unfair and crappy... but as one person has put it, we are the best at making the worst condition, hahaha so true!

Anyway, to not distract from above... Now his condition has been labeled at limb girdle muscular dystrophy 2q, genetics, neurology, they both disagree with this diagnosis because he is showing improvements. I keep getting bothered by people calling it a dystrophy just because that means they (doctors) will consider him as declining, and if the wrong doctor at the wrong time gets their hands on him and believe he is only going to get worse instead of better, that could cause problems in his care. I talked with his neurologist about my reasoning and she completely agreed. We talked about how he has been the last year and all his improvements, and to her, she has no reason to expect him to decline, at this point. She is really excited to see his development and what he will end up doing, so she decided to take the limb girdle diagnosis off of his chart and give him his correct condition name on all his charts. I just loved what she wrote up for our after summary report

To any random person, this may not seem like anything special to read, but the fact that she puts, "he will continue to gain milestones over time..." Wow, that just gets me! I think back to when I was pregnant with him and how he was going to be impossible to intubate, and possibly pass away at birth, now here we are at the point of expecting him to only continue to do well. It just seems so amazing.
Before we left the clinic, our neurologist came back and wanted to talk with us. She already found two doctors in different countries, that are working on getting trials for the plec gene! This means, maybe some day, there is a possible gene therapy that could fix his plectin gene and fix the skeletal muscle that is broken. I now have two contacts that I can reach out to and even if they don't get trials out for years, they may be able to give us even more information on the plec gene and anything else we may be able to try to help strengthen him. It was just so amazing that this possible opportunity has opened up. Last year, the same neuro doctor told us she would see it being impossible that anyone would ever work on the plectin gene because it is so rare, she did go on to admit she said the same thing about SMA(Spinal muscular atrophy) and now there is a drug to treat that. With in a year we went from nothing being possible for years to come, to this year where he is expected to continue to reach milestones (sol milestones) and a possible gene therapy in the future.

Everything else from that clinic, could not top what we talked about with the neurology doctor. No way no how. Most of the things we talked about I can't even remember because I'm still on a high from all the good news we got from neurology. Besides all the news about his diagnosis, which let me shout out about how amazing our neuro doctor is - she really has put in the work for us to figure out this diagnosis and it is doctors like this that we need on our team, she's amazing! I also asked her the million dollar question (that everyone asks)

is it possible for him to get the trach out...? 

Before I give her answer, I find it important to point out that at this point we do Not want the trach out. Yes it is annoying to have a suction machine, yes people get bothered by watching us suction him, but right now it is life saving. It helps us prevent from getting pneumonia all the time, and helps us to stay out from being admitted to the hospital every other week, so right now, No we do not want the trach out no matter how annoying it may seem to be.

She answered with, it definitely isnt off the table. He will show us what he can do, and with how far he has come with the speaking valve, she cant say that he will have it forever. So looking forward maybe some day he wont need the trach, but if he does, he does. I just really like hearing someone say maybe some day it wont be necessary, that is enough to hear.

So besides all of that, all the doctors are really thrilled with his progress, they seem him as getting stronger, smarter, and we heard many times during the day how excited they were to see what he will be doing next. His communication therapist thinks he will be a computer programmer when he grows up (since when we had his eye gaze computer he kept changing the settings on me) But that is the first time I heard anyone talk about his future that far out!

There has been so much to take in after that appointment and I wish all his doctor appointments would go as good as that one! We had a cranial facial clinic a week before this that was really not as nice as this one was. It has been a long journey, and I know it doesn't stop here with all these good reports, there will be hard times because that's life and right now we need to make sure he has exceptional pulmonary team because his current pulmonary doctor that has gotten us this far, just retired. If we don't get good support from them, that will make it hard for Sol to continue to improve. Therefore I am being cautiously optimistic and making sure we are getting the best care pulmonary wise, other wise we will have to be in search of a pulmonary doctor that will support him the way he needs to be supported. Lots of stuff floating around in my head all the time, but it feels great to remember over and over how excited most of the doctors are about him. Sure makes my heart feel good!

In just a couple of weeks we will be celebrating Sols second birthday, with a birthday party to build a bear with a couple of kiddos. I'm crossing my fingers that no one gets sick before this and we can all be healthy and rested for Sol to be able to really enjoy his day. I'm hoping for a very fun day for him because he truly deserves it. He has worked so very hard these last two years, I am so thankful that he has too <3 

in september.

I hate being the debbie downer of the blog world, but wow how september is such a difficult month!
Sometimes there is this thing that goes off that reminds me I feel very terrible. It usually takes me awhile to figure out why that is? Usually it takes looking at a calendar. For some reason, there are certain days or weeks and months, that set off depressed feelings and the end of september is one of the hardest times with the most depressed feelings. Lua got sick after a birthday party we took her to, it wouldn't have mattered if she did go or didnt because May was the one who initially got sick and passed it on so Lua would have gotten sick regardless. But it was at the end of September and then after not fully recovering, October she passed away with out us ever expecting this could happen.

Remember that feeling where you think nothing bad can actually really ever happen to you?
Only takes one time for that feeling to fade away fast! So we actually aren't invincible???

Well last year Sol got sick at the exact same time Lua did. Want to see what a freaked out person looks like?? I probably have some pictures. We were admitted with Sol around the same time that Lua got sick last year. So of course, this year I am pretty freaked out. Although Sol has been showing how tough he is at these sicknesses he has calmed me some. Except, I know how easy it is for him to not be able to fight a cold with out proper support and if anything goes wrong he could easily pass away, I will never make that mistake again to think it is actually hard for someone to die from a cold because it is possible especially if you start adding other factors to the equation. Well, we all ended up with this sinus cold this last week and Sol is still working on trying to get over his. It started out fine but now he is getting congested and when it gets to his lungs it is usually difficult to deal with, so I am still being hopeful that he will bounce back any day here. If he doesn't, I think I will lose my mind, I just cant take this time of year anymore! Last year was really difficult from september to january, I felt like we were admitted every month, and we basically were. If it is possible for us to not get sick and much as we did last year that would really be a big help!

So with all of this and all of my "Ahhhhnessss" (because I have no other words to describe?) I am at my check up this last month and find that I certainly qualify for anxiety medication. I know so hard to believe that I could possibly have anxiety! Where did that come from? Ha, I laugh to not cry :D It just becomes interesting to me what the outcome is of going through traumatic things. Daily our family can battle hard memories, we all go through it so differently too, and it is interesting to see how things that happen to us shape us and mold us into different versions of ourselves. I truly am not going anywhere with any of this so feel free to stop reading at any time, but september is such a sucky time of year i feel it deserved to have my thoughts written down about it. Ha.

Sol gives me hope though. And if he does well the rest of this month, maybe by next year it wont be as hard. He does have a procedure coming up october 6th and if that doesnt go well then october will be DEAD to me. I will never acknowledge october ever again, we will seriously be through. Just a warning october.
He does though. I Love seeing who this little man is becoming. Today he kept trying to kick off his pulse ox prob and then he chuckles about it. Boys are so naughty, even when they have such little movement they find ways to be naught. It is truly the best, and some what refreshing from dealing with all the emotions a girl gives you lol! We recently went to a genetic appointment and in that appointment, something I have not told on my facebook page for sol, or many other people, The neuromuscular doctor has found a drug that could potentially help Sol gain some strength. We will put him on it for a month and see what happens, she said if it is going to work we will see it happen right away. I am not starting this until after his procedure though, so not until october will we try it, but this is something i have been wanting, anything that could even possibly maybe help or maybe not do anything, but it makes me feel like we are trying SOMETHING, you know how hard it is to watch your child be in a body he really wasn't meant to be in? This feels like a little piece of hope and if not this, maybe some day there will be something. Each day I watch him, ready to jump like his sister, or walk like is cousin, or play like the neighbors and each day it breaks me a little more that he wants this and cant do it. It is a hard thing, but he is creative, between the two of us, we find ways to get things done so that is why I say he does give me hope. He is of course my rainbow baby and he is living up to the name every day. Him and his sisters makes me one proud mommy!



 

nicu awareness month

Wow, I did not realize that I have not written an update since spring break! I knew I havent been in the mood to do so for awhile, but have not realized it has been so long. I was driving to the store today when I started to think about how this month is nicu awareness month, something I haven't typically done much for, but reading some updates from parents that are currently in the nicu with their little ones, got me thinking about our time at the nicu and how traumatic it can be to be in the nicu. I wish I could let everyone see a glimpse of my memories from the nicu, so that people can truly grasp what it is like to have your baby in a nicu. Since I cant, I can only share a few thoughts that will stay with me forever. In honor of nicu awareness.

As many know, we spent time in two (technically 3) different nicus, and I have to say that they were quite different experiences for us. The nicu stay with Sol was easier and less traumatic, for. The. Most. Part. Two incidents made for some traumatic memories, but actually his admissions when he gets sick scares me more than anything that happened in the nicu with him. One thing that made his time in the nicu less painful (we will say) is that we knew what to expect. I knew I needed to be louder and more opinionated this time. His room was also much nicer, bigger, and quieter. So when i think back about Sol being in the nicu, i have so very few sour moments. I miss some things he had while he was there, and now I get to see the silver lining which is getting to have a toddler that didnt just break out of the nicu at 3 months, but has thrived and gotten stronger and grew into this 20 month old that he is. (Saying dada and lala and sooometimes momma) When I think back about our time with Sol there, the hardest parts of our stay was me pumping 20 hours a day! Being up all night and day pumping away. Ok maybe not 20 hours a Day but it sure felt like it. Also, of course staying in a place that isnt your home can be so uncomfortable, along with not being able to see your other child and your husband 4 days out of the week. Those things were so very hard. But every day when I would go in to see Sol, he would be his relaxed self ready to chill with me. I would get many good reports from doctors about him. Everyone loved him! I heard such few negative things while we were there, which was so helpful because i hate getting bad news by myself.

That last part I believe, no bad news with sol, is what made all the difference between Sol and Luas stay in the nicu. When I think back to our stay with Lua, i have such few good memories. We had amazing nurses that i wish so badly we could have also had with Sol, we had a select few great doctors! But there was too much unknown. I mean, Lua was just a ball full of unknown where very few people thought she would survive for very long. Sometimes I still cant believe that the doctor that delivered her (dr sutton) was able to keep her going until help arrived. I truly did not understand what was happening after she was born. Just image, you are pregnant with your second child with what seemed to be a completely normal pregnancy, you go into labor on your own, after many hours your baby is born and then a second after your baby is born, the doctor takes her away and quickly the room starts to fill with people, you cant see anything, cant see your baby, no one will tell you what is going on, oh and you still have to deliver your placenta yet. At one point i believed she was going to die there on the table, but then help arrives and they get her stable and I asked a nurse if she was ok. The nurse says almost nothing just a very small I dont know.
Anyway moving forward...

When we were sent to the childrens nicu, we were under the impression we were going there to have her contractures fixed. Imagine our surprise when we were finally allowed in by Lua we had a team of 8(?) doctors standing around her telling us she is going to die. Utter shock. This is my first memory that goes through my head every time i think about lua being in the nicu. A bunch of doctors, which that alone is tremendously intimidating, standing around our baby telling us she is going to die.  They didnt think she would live to 6 months, they probably didn't expect her to leave the nicu in reality. Now, besides that moment... numerous people would come in many days in a row to tell us how severe, weak, and a lot of work lua would be. This is our baby! Our newborn baby and we were expected to just give up on her immediately. This is what I get to remember whenever I think of Lua being a newborn. Never any good news about her. Multiple times being asked if we rather her just let her go. I can't even justify using the word traumatic, there should be a stronger word, but yes so very traumatic. Not to mention all the other things that make staying at a nicu hard, living away from home, having a 2 1/2 year old at the time and trying to balance both being in the nicu and taking care of her. Yes, Lua's nicu stay was much hard than Sols. This brand new world we entered and we had no idea this would ever become our life.

But, both our babies made it out of the nicu. Many times parents don't get to leave the nicu with their babies. Even if we did lose Lua 4 months later, we were able to take her home. What i would give to have had the knowledge we have with Sol with Lua. I know for a fact she would still be here if we knew the things we know now.

I wish i had some amazing words for any new parent in the nicu, but I don't believe there are any such words. No matter how short or long a nicu stay is, you always have the grief of the loss of that perfect  birth, leaving the hospital with your baby, or whatever it was that you pictured would happen after you have this sweet baby you longed for. The loss of that is definitely fair to grieve over, but it is certainly worth it to make it through each day and be able to take your baby home. That is the best moment, best feeling ever.

spring break.

I started this during mays spring break but didnt get very far, like the only thing i had down was .... spring break. I'm going to leave it as spring break though. I didn't write anything because i felt myself getting very depressed and only wanting to talk about the bad things. I have spent weeks trying to pull out of this little dark spell and im starting to feel better in some aspects of life. Others not so much but at least the 'other' issues are things I assume everyone goes through.

Well spring break for us was very fun... except not. I started out our week before spring break with strep throat. Causing us to miss our big genetics and neuro clinic. We cant get back into that until September so i am so seriously disappointed with myself that i had to get sick that day. The next day i spent recovering, and then it didnt take long to spread to my husband. At that point i called the doctors and asked for all ov us to get antibiotics. We had so many appointments coming up i was trying to get us to at keastba few of them. On top of appointments, i felt so deathly i couldnt imagine what would happen if sol caught it too. Our family doctor did inform me that it was rare for kids under 2 to ger strep so that made me feel a bit better. Nevertheless, towards the end of the week three out of four of us were on antibiotics with sol being the only one safe. That was until the week of spring break when he woke up super suctionie. I spent the whole day doing a ton of breathing treatments on him and coughs galore. I dont think he had strep but they aren't positive, we did end up doing antibiotics with him too just in case. I spent that night, after getting up at 4am, doing his air way clearance treatments until 1 am becuse this sickness had the secretions going right to his lungs and i was trying my hardest to avoid being admitted to the hospital. At 1 we did the switch and at 6 i was back at it on clearing his secretions. He was able to stay out of the hospital, but it took a long time for him to start to recover, i was starting to have my doubts! By the end of that week, instarted feeling miserable again. One night while i was suctioning sol and checking to make sure his lungs were cleared, I felt as if strep was coming back! By morning i couldnt talk. Called the hospital and they were very doubtful that i had strep again, but i was feeling so bad i had to go in. Sure enough, strep again. 20 days of antibiotics! And now at the end of those I started to have a skin reaction, so it has been a blast lately!

Now on the mend, we have had appointments to make up for, extra work days to put in, and sols typical nurse left for maternity leave the end of the week of misery. It has been an interesting week to say the least. Sol had his swallow study this last week and it was very interesting, he failed, but it qas interesting. They decided to do baby food by spoon and not a bottle which we had been practicing on, and he did attempt to swallow the food right away and the first swallow went down but the remainging stuff he silently aspirated. So he cannot do anything by mouth as of now ans we will do a repeat study in 3/6 months or so. We know what to work on now ans hope we can get him there. It would be wonderful to get him to eat a few bites by mouth! 

Well thats a lot to update on for now and it is taking me weeks to do so thats that. 

Also most of this was written on my phone. Forgive the errors ill have to fix when i see a computer again.