Well so much has happened in our three days here that I am just amazed. We came in Thursday night and A was SUPER happy to be here. What a kid! They did the bipap the first night but it did not go as well as they would have hoped so they did give him some sedation. He did about three hours on it the first night. It was great for me, because the respiratory therapist on with him for the past three nights knows him very well.
Friday I came in and they had already done an echo and we headed down to do an upper GI to check his fundo. All was great there. No results as of yet from the echo.
He also started with a fever on Friday and still has it today. So yesterday they did some blood cultures and a urine culture, results will be in tomorrow.
Last night on the bipap they gave him more sedation than the first two nights and he did about 5.5 hours on the bipap with ZERO desats!!! I am thrilled!
He was supposed to go in today for a CT scan of his chest with contrast however it is pretty crazy in the PICU today so they are holding off on that until tomorrow. I had a great meeting with one of the doctors yesterday and he feels that this CT will possibly help A’s respirologist maybe get some more insight. They were a bit iffy about doing it because they have to give him an IV but I told them that I was willing to let them do that if they felt this CT would help them. This doctor has done NOTHING but prove himself to me and I have total faith in belief that he just may be THE one to finally figure A out.
Please keep up the good thoughts and prayers. A is definitely in the right place to be sick but we didn’t come in for that! The doctor two nights ago said to me “this was supposed to be a simple admission for bipap but yet it seems so complex.” That is my boy!
Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.
Not too much new going on around here. Mommy and daddy have both been sick with sore throats and head colds but thank goodness that A has not got it! *knock on wood*
I am pretty nervous when it comes to getting sick now that he had his last ICU stay on the vent. I pretty much wipe down everything in our house with lysol wipes like three times a day as well as spraying Lysol.
Still having big time issues with the seating clinic and not being to find seating that works for him. It is SOOOO frustrating!!!! We are now trialing our second wheelchair which is called Kid Rock. It is pretty neat as it is the only chair that allows movement. Basically when A arches the chair moves with him up to a maximum of a 35 degree angle. To get out of it he has to use his stomach muscles to bring it back to sitting. Which I might add he can do!
Other than the same old things are good. We carved a pumpkin last night and daddy is looking forward to coming home from work today and getting dressed up with his little man. Those pics will follow!
I should also add that Stacy, a wonderful blogger who gets a lot of traffic on her site from all kinds of people (including doctors!) has posted a quest for help with Ashton and his spells. She was wanting to post it in the past however with my address and phone number it wasn’t really an option. Now that things are different she agreed. I am hoping that someone KNOWS what he is doing. You never know where answers may come from!
First, a very happy 19th birthday to Aunt Shorty!!!
So I seem to be really slacking on updating this blog, but this summer is just crazy busy so forgive me!
So I had my bachelorette on the 18th and it was fun and all of us had a great time. The only crappy part was, the Friday night that I got there I started with a sore throat! By Saturday night I had a pretty bad cold and my throat hurt just to breathe. I didn’t get ANY sleep and needless to say the drive home on Sunday was long and I just wanted to cry I felt so sick. When I got home I ended up in bed and tried to sleep. A had a good weekend with daddy and grandma and was a good boy.
Monday the 21st I had my four wisdom teeth pulled under a general anesthetic….figured I might as well feel like crap for everything all at once! If I didn’t get them out that day then I was looking at waiting until September and there was NO WAY that I could wait that long. They have been so painful and keeping me up at night. Recovery went very well and I only ended up taking pain meds on the Wednesday. Much easier than I thought that it was going to be!
Tuesday evening (the 22nd) I noticed that A seemed to sound congested. While we were out I picked up some benadryl to give him to hopefully help him sleep. By Wednesday he was VERY sick. He is now on a monitor at night again as I need to know what he is doing. Overall he has been doing pretty good but there are definitely moments where he drops very low and does need some suctioning and stimulation. I just hope that I am able to keep caring for him here and not have him end up in hospital. This is now day 8 for him and he doesn’t seem to be getting any better. I however still have a bit of congestion and cough so I am not too worried at this point.
So since my last update not too much has been going on as we have been kinda trying to recover and get better. It totally sucks being sick! I tried SO hard to do everything right but of course he still ended up getting it from me.
On another note, today was the day that A got his wheelchair. We are trialing it for a month and see how it goes. If I am happy with this one then they will order the same and if not then we will trial another one. I was excited to get there and see this wheelchair and have something for him to finally sit properly in and get rid of this darn stroller that I can’t stand! At the same time it is hard because although we have always known that he would end up in a chair it is reality. I have to tell you though, he sits AMAZING in this chair!!!! We will definitely have to use it a ton more to see how it works and we base our decision on the chair very well.
When we got out to the car and loaded up the wheelchair and his stroller I was okay. It was when I looked in my mirror and saw the wheelchair in the back that I started to cry. There definitely is a process that I will have to go through to deal with this. J and I have both been talking about this wheelchair for a bit and I know that we both hoped that maybe, just maybe he wouldn’t need one. High hopes, but as parents it is one of the hardest things to accept. That your child will never walk.
Anyways, A and I went to the mall afterwards so I could try it out and get a few things done at the same time. So far, no complaints! The only complaint I do have is how many people STARE! It drives me up the friggin wall. Now most of the people that stare are children and really they don’t any better, but it is their parents job to teach them about how kids can be different. When kids aren’t told about things like this then they just don’t know what to think. Well anyways, that is a whole other post.
Daddy came home from work pretty early today and when I heard him come in I went into the kitchen. He looked at the chair and said “wow, his other one didn’t look anything like that.” I said “what, like a wheelchair?” Then his tears came. We hugged and cried together.
Oh where to begin. I am so frustrated. The complex care docs were in this morning and from the way they are speaking they are wanting to get A home. Now this is a great thing but I want answers before this happens. He is being weaned more from his morphine today and will be off it totally by Thursday or Friday. They also ordered that is not on a monitor during the day but only during sleep. I think much of this has to do with the fact that the docs do not want me watching the numbers. I have issues with how low his oxygen has been going for the past few days.
On a good note he has not had any of those crying fits today, last one was last night at 7pm. There goes my theory of it being hunger as his feed just ended at 7pm.
Blue spells still continue. The doctor says that he believes it is breath holding. The nurses on the floor do not understand as they are the SAME as before but worse. I am beyond confused as to why they are not concerned about them now.
Oxygen was discontinued at noon today and when he went down for a nap at 1pm he was satting between 78-84. With blow by he is 99. Why does he suddenly require oxygen while sleeping?! When we came in hospital he was not on it and his average sat while sleeping was 95.
To top everything off I am starting to get sick I think. I have a sore throat and feel sick to my stomach. I am just not in the mood.
Still waiting to see the chest team now as we have dealt with the reflux. (They wouldn’t do the sleep study or see him in the beginning until his reflux was dealt with.) Hopefully they have more convincing info for me then telling me that A is holding his breath.
First here are some pictures I found on my camera from when grandma and grandpa babysat on the weekend….
Hahahaha I had a good laugh when I saw this one…wonder who put his leg like that?
Well today was my birthday and what a day! Last night around 8pm A started to act very strange. It was so weird that even daddy noticed and we were both pretty concerned. He would go very pale and then you could tell that he was refluxing. Next he would go very off colour and then the vomiting started. The first two times were just clear and the third was a huge amount of bile.
By 10pm I was starting to get pretty worked up about how he was acting. I have a very strong instinct when it comes to A and I knew that something was going on. I still don’t know what last night was all about, but I hope I don’t see it again!
Anyways I decided to kick daddy out to sleep on the couch last night. I had laid A in his bed and right away he threw up. With him being sick and acting odd I really wanted to keep a close eye so he slept in bed with me last night. From 11pm until this morning at 8am he had vomited a total of probably 15-20 times. Every single time it was a ton of formula as well which had me pretty concerned. I have to say that he still slept pretty well though considering. He would start fussing and then I could hear his belly gurgling and then he would vomit and go back to sleep.
This morning I had a ton of laundry to do to say the least and things just went downhill. At 9am he normally gets a break until 1pm but because I had run his feed at half strength and 18mls/hour less I decided to run pedialyte. He has only vomited twice today and that was when I had tried half strength formula again. So it is now 11pm and he is still just on pedialyte.
The diarrhea started as well today but thankfully his last huge episode of that was at 5pm. At the current moment he is sleeping on the couch and his nurse is here. I am heading off to bed to get a good night sleep!
We still headed over to my parents for dinner and cake tonight and I got some great gifts!
We got the special tomato brought over today to trial to see if it is something we would like to get for him….of course with not feeling well it is hard to tell if he likes it…
A beautiful smile from my sick little man…
Well today has been a much better day around here. I have still been sleeping out on the couch with A at night but think that tonight he may be okay to go back into his bed and me into mine! He is still very congested sounding and I have him on a half litre of oxygen, sometimes bumping it up to 1litre.
Okay, I have to say thank you to all of the moms that have watched my video and given me their opinions. I have to say that it really varies from person to person! I have four moms saying that it looks like a seizure, I had two say it looked reflux related and a few others that said no to a seizure.
Here is why I do NOT think they are seizures. He spent 227 in the NICU before coming home on oxygen, g tube feeds and an apnea monitor on Jan23’06. The day after coming home he had one of these “spells”. (He had probably five in the NICU) Within the next four days he had a total of 7. He was readmitted and ended up in the PICU on a vent. He continued with these spells even on the vent. At one point they even called a code blue because he was going so low in oxygen sats and heart rate.
***These spells that occur, he drops his sats to the 20s along with his heart rate. He goes completely off colour, there is no chest movement and he goes stiff. There is no way to get air into him…when they would bag him it would just pop off.***
They diagnosed him with ALTES-apparent life threatening events due to reflux. They then changed his g tube to a gj tube. On Feb23’06 he came home again. He went all the way until July’06 and had two spells in one day. We just happened to be doing an oxygen trend and his sats were 23 and heart rate of 42. Took him to emergency but they didn’t do anything.
He went all the way until April 4’07 when he had another one. Then June 13th’07 another one. This one was at a hospital that has a wonderful reputation. Once again, nothing was done. Now this past Wednesday he had another one. This one was just over three minutes long. I called 911 he was taken in and the doc is saying seizures. I have a VERY hard time with this b/c my gut says it isn’t a seizure. I mean I have had about ten doctors see him do these spells and when I would say “seizure” they said NO.
SO, I guess my questions are these. If it IS seizure then why have SO many doctors said no? If it is seizures then why did the spells stop after the gj placement for so long? If it is seizures how come nothing has shown on the two eegs that he has had? If it is seizures then why does his oxygen go so low? I have heard that it is not common to go off colour with seizures, let alone down to the 20s. I also had one mom tell me that her son was blue but was still satting in the 90s.
My gut tells me that it is something to do with his reflux and/or airway. His last bronchoscopy was in February of 2006. I have been asking and asking for another but never got anywhere. This was until last month when I met a new doctor. He told me that he would be arranging a bronch, a sleep study and a feeding study. Well it has been six weeks and I haven’t heard a thing.
We will also be seeing a new neurologist in the beginning of December so maybe they will have some thoughts about what could be happening. Two neurologists that I have seen have both said no to seizures as well. I am just so frustrated with all of this and I wonder WHY doctors are so nonchalant about what is happening…
Now to leave with some new great pictures…
If ANYONE has any ideas on what could be happening PLEASE send me a message. At this point I am willing to look at everything!!!!!! And also, is a bronch enough to tell if it IS airway related or is there something else I should be asking for as well? I might as well try and get all the things done at once….
First I want to say thank you to everyone that has been sending their thought and prayers A’s way. It really means a lot to me to have so many wonderful people supporting us and pulling for him.
I should also add here that I don’t think I was very clear about everything yesterday. Besides the spell that he had (which we don’t know if they are seizures or not) A has been very congested and having difficulty breathing. He is being treated for aspiration because of what happened Sunday night. With the chest x-ray looking fine it is hard to know what is happening. Today I was wondering about RSV but I was not about to take him to the hospital just to do a swab when he is NOT in any shape to go out.
So it was a pretty long night around here last night. I pushed our loveseat up against our couch so that I could sleep beside A all night. Or I guess I should say so that I could lay beside him all night! Anyways, he was doing okay off and on until about 2:30am. He was very irritable which in turn causes many more dystonic movements. At 3am I decided to give him a dose of versed. I have given him two doses before here at home about a year ago when he was sleeping like crap. I know back then that the effect was very quick but did not last very long at all. I was hoping last night that it would just take the edge off of him enough that he could get some rest.
Well within five minutes I could tell by his eyes that it was starting to affect him. Then came the frothing at the mouth and then the blueness to his lips. I turned on the light and grabbed the suction machine to start with that. I was getting a TON of junk out of him. I then cranked up his oxygen to five litres and let him try to get some colour before going in to suction again. The colour wasn’t happening. I went in and woke J up because I was so scared about what was happening. He immediately came out and we decided to suction again. Throughout this he was not fighting me at all and more or less was acting as if the suction didn’t bother him. Anyone knows that this isn’t normal and therefore had me even more scared. I really started to panic because I noticed that even his fingers and toes were blue. J went over to the oxygen and noticed that the end wasn’t even hooked up and must have gotten knocked off when he came out of our room. Within a couple of seconds A was getting pink again. For about the following hour his breathing was very off and he just was acting strange. The only thing that I could think was that it had to do with the versed. I won’t be giving him that stuff anymore! I have to tell you that at one point J and I really thought it was the end. It was almost as if A’s body was giving in. Really weird and I can’t explain it well but it was as if life was suddenly in slow motion.
I picked him up and just started to cry. I am so angry that he has to go through this. I am so angry that he is doing this but yet there is no one that will help figure out what is going on. I am so angry that I even have to deal with it. It breaks my heart to know that he is hurting and suffering and there is nothing that I can do to make him better. It just plain sucks.
The rest of the night I pretty much just watched him sleep and breath. Grandma was here early this morning so that I could get some rest. He was pretty restless all day for her and didn’t sleep much. It is so hard to see him sick because he is such a different little boy.
A went to sleep at about 7pm and woke up about 10:30pm. I did a little bit of chest physio and then suctioned before doing his breathing treatment. I got a little smile out of him when I was tickling him which was nice! I got him ready for bed and then put him in his chair for a bit.
He is still very stuffy and congested sounding but looking a tad on the normal side. I tried to shut off his oxygen a couple of times today but he isn’t taking that. The nurse from the oxygen company was here today and she had him hooked up for a while to do the trend she needs. Turns out the hospital didn’t do a printout that we need for coverage of the oxygen so she asked if I could turn it off. The trend they need to cover the oxygen has to be with the child satting below 88. For the five minutes that A was turned off he was around 80-84 coming up above 90 maybe once a minute. Bad news, obviously something is going on that he needs oxygen. Good news, we now will have oxygen coverage for a year.
Are you ready for this?!?!?! I don’t know why suddenly he is like this but I am not complaining!!!
As for the versed, I had a NICU nurse from my preemie group send me this link HERE….makes me really wonder if the whole ordeal last night was from this medication?!
***I have figured out how to load my video onto my computer but now I cannot find anywhere to upload it so that I can send it to those who would like to give me their opinion. Once I figure that out then I will be sending it out.***
A is still pretty sick. He hasn’t slept much in the past 24hours and I am sure that tonight isn’t going to be very fun. Just keep your fingers crossed that these antibiotics and steroids do the trick before we see the doctor on Thursday!
I found this and wanted to share….I will warn you that if you are sensitive you may need a kleenex or two.
To You, My Sisters
by Maureen K. Higgins –
Many of you I have never even met face to face, but
I’ve searched you out every day. I’ve looked for you
on the Internet, on playgrounds and in grocery stores.
I’ve become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my “sisters.”
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.
We were initiated in neurologist’s offices and NICUs, in obstetrician’s offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn’t
quite right. Then we found ourselves mothers of
children with special needs.
We are united, we sisters, regardless of the diversity
of our children’s special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children’s needs are not as
“special” as our child’s. We have mutual respect and
empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know “the”
specialists in the field. We know “the” neurologists,
“the” hospitals, “the” wonder drugs, “the” treatments.
We know “the” tests that need to be done, we know
“the” degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.
We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during
“tantrums” and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can’t understand what it’s
like to be in our sorority, and don’t even want to
We have our own personal copies of Emily Perl
Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The
Special Mother”. We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors’
front doors on Halloween, and we have found ways to
help our deaf children form the words, “trick or
treat.” We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We’ve gotten up
every morning since our journey began wondering how
we’d make it through another day, and gone to bed
every evening not sure how we did it.
We’ve mourned the fact that we never got to relax and
sip red wine in Italy. We’ve mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we’ve mourned because we left for the airport
without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.
We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.
But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.
Well the whole ordeal started yesterday afternoon. A went down for a nap at about 1:30pm. It was very restless and he just was not comfortable from all the gas that he has been getting lately when he tries to sleep. At 4pm he was awake so I started to get him ready to head over to grandma and grandpas for dinner. When I went into his room to grab his clothes I heard him gagging. When I came out he did a HUGE projectile vomit of formula. Yes, formula. I never understand how he does this WHEN he does it. Anyways, he was happy and smiling after so I just figured it was a one time thing.
We noticed after it happened that he sounded very congested/wheezy and I just thought it was from the vomiting and he still had some in his airway that he couldn’t get rid of.
At grandma and grandpas he was good and the happy guy he normally is. Here he was sitting with us while we ate…
When we got home last night he was fussy and seeming to sound worse. When I put him into bed he had a couple blue spells from trying to breathe. I knew then for sure that something more was happening with him, possibly from aspirating the vomit. J stayed up with him so I could at least get some sleep. Even with my door closed I could hear A in his room trying to breathe, it was SO loud.
Finally at 3am J was able to come to bed. 3:30am I was up with A. I called and left messages for his physio, OT and speech therapist to tell them that I was cancelling their appointments. Liz came (his dietitian) and he is now 24lbs3oz. I had told her about his vomiting and how he was sick, had a low grade temp, blue spells and asked if she thought he could have aspirated. She said it was possible. I called his ped and got him in to him for 4pm. Well turns out that A did aspirate. He is now on steroids for four days and an antibiotic for ten days. We need to be on the safe side so that it doesn’t turn into aspiration pneumonia as that would be an absolute nightmare for him. We will be going back to the doctor Thursday and hopefully he is better or else he will be admitted.
When we got home I took his temp again because he felt so warm. It was 105! I gave him some advil, used a cool cloth on his head and cuddled with him. As of now his temp is back down to normal and his breathing is a tad better. His nurse is here tonight and she said he still sounds very tight and wheezy. It is going to be a long night I am sure but I am off to bed for the entire night!
My poor baby…
A quick update on my little man. We had a heck of a night last night and I think I had about an hours sleep in total. He was fussy, feverish and just not feeling well. I was happy that we had the doctor today.
Grandma was here today and I think for the first hour he just whinned constantly. Not happy at all. It is so hard when they can’t tell us what is wrong and how to help them.
We took A to his doctor this afternoon and he has an ear infection and post nasal drip that has caused a lot of puss and obviously pain in his throat. He was put on biaxin and if his breathing isn’t better by Friday he may be admitted to be put onto IV antibiotics. Fingers crossed that we won’t end up there.
I was able to have a nice long nap tonight from 5-8pm and the nurse is here tonight. Catch up on some much needed sleep!
After one dose of antibiotics, a nice long nap, some advil and a shower…
So today is the day that A would have been 2 years old had he of waited until his due date. I still can’t believe how many people ask me if we use his “real” birthday or the birthday he should have had. I mean what sense would it be to celebrate his birthday on a day that means nothing now?
It’s funny too about this whole actual age and corrected age. In the past people would ask how old he was and I would say “well he is 5 months old or 1 month corrected…or he is one but 8 months corrected.” But now that just seems to be a thing of the past. The corrected age doesn’t mean anything to me anymore. I know that the doctors still use it but I don’t see the sense.
Today isn’t a great day though. A is still pretty sick, has the fever now and will be going to the doctors tomorrow. Physio was here this morning with OT but he didn’t do very well. A lot of blue spells and crankiness. Nutritionist was here as well. He has actually lost a full pound!
Now some reminiscing…
My journal entry from October 1st 2005:
Well sweetheart today was the day that you were supposed to come! You are 16 weeks old now or full term. And you are still so tiny.
I am exhausted and really need to sleep. I must have been last night too because I didn’t even write about your upper GI yesterday! It went good and you handled it well. This is good because I was up all night worrying about it because Danielle said she thought you would misbehave. But you didn’t! So the results show that you have severe reflux and I am not sure yet what they are going to do for you. There is some talk of a stomach tube to feed you but Marg told me that it won’t stop your reflux so we will have to wait and see.
Today went good for daddy and I. We got our new apartment and we both love it! It is really nice and I can’t wait to move all of our stuff in tomorrow. I am really excited though because we finally get to do your room!
Janice was on with you again today and you were doing well every time that I called to check on you. I miss you and can’t wait to see you to give you kisses! I love you sweetie. You will have a good night because Kris is on with you. Makes me more comfortable too knowing that you have great nursing while I am here in Guelph! Oh and you were 1989 grams tonight!
And from October 1st 2006:
Well this morning we drove daddy to work and then came back here and you had a nap. I had to wake you up at 10am to get you ready for your music class. You actually were really good there today for the first time. Both of the other times you were tired and fussy. You were full of smiles. Then grandma came and picked us up at 1:15pm and then we went and got grandpa from work. We were in Hamilton for 2:30pm for the meeting. It actually went really well. Dr. Meeny did admit that he believes that the domperidone had something to do with your problems but went on to say that he believes there is something else as well. He was very impressed with me and my knowledge of everything. He was also impressed about how supportive grandma and grandpa are. Dr. Sant’Anna is going to book you for a swallow study and a ph probe study to see how bad your reflux is. If it is better then we are going to change your gj tube to a g tube. And then we can work on more oral feeding and hopefully get you off the tube altogether. I am just really nervous about you having spells again. But maybe since you are older and your reflux is much better with the prevacid you won’t have a problem. She did also talk about the surgery as well. It is called a fundoplacation. She said normally the g tube is done with that to help the reflux even more. Dr. Mesterman is going to step back now since you aren’t on medication and just let Dr. Rosenbaum deal with that. She said that it is basically the same stuff that they deal with. So we’ll see how things go with him next week. She also was discussing your CP and her along with Dr. Meeny aren’t comfortable saying that it is CP. So that is frustrating. Hopefully Dr. Rosenbaum gives us some better answers when we go next Wednesday. We went upstairs afterwards and saw Rosemarie. She hasn’t seen you since you left. She couldn’t believe how big you were and how good you look. It is nice to see people that we haven’t seen in so long that were so great with you.
Oh it is so funny to look back at some days…..just shows me how much I have learned even in this past year. Not cerebral palsy? Domperidone? Fundoplication?
I love you little man.
Well we are still a pretty sick household here! A is on day 11 and mommy is on day 6. I never understand how we get sick because I am constantly washing my hands and using sanitizer. But it just goes to show that you can’t kill every germ that comes your way!
I had to post these next two pictures because they are just way too cute! Now anyone that knows us, knows that the dogs are NOT allowed on the furniture. They are very good about not getting up but lately Cujo has been doing some sneaking. I have come home a couple of times to find hair on A’s blanket. Well the other day I came in and he was sound asleep so I had to grab the camera…
Yesterday A had his two year check up with growth and development. The doctor that he sees is absolutely awesome and I always am happy to go and happy when I leave. He was very happy with A and the progress that he has had since he last saw him six months ago. Of course, six months ago he didn’t have his cochlear implant and that has brought him so much further.
The first thing that he always says is “so….brag about A.” I have gotten good but I admit the first time that I met him and he asked me I started crying.
I admire this doctor because he is honest and to the point. I was asking him his thoughts on ABR therapy and hyperbarics and he said “if it sounds too good to be true, than it probably is.” I am always looking for ways to improve A’s life and have done tons and tons of research into many different things that I would like to maybe try. However it is hard when some of these things are huge amounts of money and there is no guarantee that it will benefit him.
The power wheelchair was brought up again and it looks like he really will be going into one next year. I will be calling kidsability to get A into the seating clinic for this as well as trying to find him a suitable seating device for in the home. I am having a heck of a time with him now that he is older and wants to go, go, go. The only place here that he sits properly is his swing, however he is getting to the point where he is almost too big for it. With hip and spine issues with kids that have CP I have to worry about his posture constantly.
I told him that I really worry about the future and what A will be like. I always wonder if he is going to be the kid with CP but totally there and right on target with his friends or if he is going to be the kid with CP that is 15 but at a much lower age level. I know that he can’t tell me but I admit that is one of the things that I think about all of the time. That is the one thing that really sucks about cerebral palsy. The waiting game….
All in all it was a great appointment. I had a call the other day from his secretary to remind me about the appointment and to add more time because we would have to do the Bailey’s test. I was not impressed. I think that these tests to see where your child is developmentally are just crazy to do for a child that has cerebral palsy and is deaf. At the end of the appointment with him he said he would see us next year. I asked about the Bailey test and he said “nope, you are not doing it.” Right on!
We headed up to the NICU to see if one of A’s nurses was on, but of course no luck again. We haven’t seen her in a year! If you are reading this Marg, we try and see you all the time and miss you! We did get to see Joyce although A was upset with her for leaving him. hahaha
We really miss having Joyce around. She is absolutely amazing and one of the most caring, loving nurses that I know.
And now for my little man. As you can see the sickness doesn’t stop this kid from smiling!
Well it looks like I spoke way too soon on my last post! A is STILL sick and he has been so kind to pass it on to mommy. Nights have been pretty rough because he is having such a hard time getting rid of all the junk in his chest. Much more vomiting happening as well which isn’t making things any better. I started to get a sore throat the other day and immediately started taking meds to help get it before it started. Well the sore throat passed but I have a cold and just isn’t making things around here very fun!
Sunday afternoon A almost went into a full spell as well. He was sleeping, well at least trying to sleep when he started coughing. He opened his eyes so I turned him over because I could tell that he was having a hard time catching his breath. Well the next thing you know he starts to go off colour, was very upset and starting to go stiff. I immediately held him close to me and just started trying to get him to take a breath. The doctors have always told me to try and remain calm, but that is much easier said than done! How the heck can you stay calm when your baby isn’t breathing!? Anyhow he eventually took a breath, probably about five seconds before he would have been right into the spell. He had very glossy eyes after and had the look like he had just had a full spell. It is just so weird and I don’t understand how or why it happens. Hopefully one day I will find a doctor that wants to figure out what the heck is happening when he does this!
Just some comparison photos for today!
A at 3.5 months old in the NICU at just over 4lbs…
15.5 months old at about 15lbs…
A now at about 25lbs…
A big happy birthday wish to Aunt K! We all love you, miss you and wish that you lived MUCH closer! Maybe one day A will be able to talk you into it! hahaha
So my little man is sick. The last two nights have been ROUGH to say the least. He has a pretty bad cold and today started with the fever. His cough is not sounding very nice either and he is just plain grumpy. I feel so helpless because there is nothing I can do to help make him better. It doesn’t help that he cannot have any meds to help with the stuffed nose, coughing and sneezing because he cannot have decongestants.
Yesterday we were at McMaster for his GI appointment. I had still never heard from the respirologist last week and yesterday I was hoping for a plan. Well actually that WAS the whole idea of seeing respirology and then GI. But as is no surprise the two had not even discussed A yet. Ugh.
So I had asked about possibly getting a g tube placed to try it out with A. Sure was the answer with the added “you are taking a risk….” Why is it that I always feel like I get stuck in a decision because no one wants to back me with it?! “Why do you want a g tube?” That was the next question. Well for starters, the gj tube was supposed to be temporary and it has been 20 months. Secondly the kid never feels hunger because he is fed 16 hours a day. He wouldn’t even know what hunger was if we were to stop feeding him. With a g tube I hope to get down to feeds every four hours or so and then work on oral feeds. It is kind of hard to get a kid to eat orally when he isn’t hungry. Maybe hunger is going to be the key to helping him do oral feeds. We all know that he was a good feeder before the tube so why not again?
Now I know that the gj tube was done because he was admitted into the PICU with life threatening events most likely due to reflux, BUT he has still has those spells with the gj. To me I feel that if we go to the g tube and he starts with the spells, then at least I can say that I tried and I will know that it isn’t possible. However without trying we will never know.
So now the plan is that the respirologist will call me in the next couple of weeks and we will see where to go from there. His GI told me to ask for the next available appointment to come back. LOL Well that wasn’t until March! I am not waiting until March to discuss things further.
On our way out we stopped at the NICU and got to see A’s primary nurse Danielle.
Last night was the first Leaf game so daddy and A cuddled and watched the game. Well some of it…
On a final note for today, I did hear from the doctor in London the other day about A’s MRI. A has mild PVL with a lot of white matter around the ventricles in his brain. English you ask? I’ll dedicate my next post to that!
Am I ever happy that A’s nurse was here last night! He had a pretty rough night with vomiting bile, a nose full of boogers and just plain irritability! I did hear him at 2am at which point he was up until about 3am. Then from 5am until 7:40am she had to sit in his rocking chair and hold him. By the time she left at 8am he was back asleep so I decided to cancel his physio for today that he was to have at 10am. Good thing I did because he didn’t get up until about 10:15am. He actually doesn’t seem to be that bad right now except for sounding a bit congested. This whole thing brought me to thinking about the RSV shots that he has received for the last two years. I really didn’t think he would qualify this year as he isn’t on oxygen anymore and he hasn’t been hospitalized with pneumonia or anything of the sort. I called his doctor this morning and he is on the list! This is awesome news and can help me relax a little bit!
On Saturday I took A with me to go and meet a photographer that Lisa had recommended to me. I was FINALLY able to walk away knowing that this IS the one that I want there on my wedding day! Her work is absolutely amazing and there isn’t a doubt in my mind that I won’t be extremely happy having her do our pictures. So thanks Lisa for helping me make one of the biggest decisions for my day!
Saturday night we all just settled in and watched a movie. Or should I say tried. LOL A is constantly wanting to go and doesn’t just sit on my lap anymore when I want him to. The happiest place for him is the floor! He loves the freedom of being able to move around and not have any boundaries. However with his feeding tube this is difficult at times to do!
Here he is being the little monkey that he is…
Yesterday was a typical Sunday around here. Just hanging out and not doing much of anything!
Still no word on the MRI from London. I called there on Friday and got ahold of the secretary and she told me that he was in a meeting until 4pm (when they close) but that she would have him call me. Nothing. And still nothing from he respirologist at Mac either.
Well I haven’t posted in a couple of days as things around here have been busy and A still has his low grade fever. Sunday grandma and grandpa came home from up North so we were all over there waiting for them to get home. It was also nice to be in the air conditioning!
Monday was a crazy day for me. I was having one of my very emotional days where I feel like my world is falling apart. Or has. I really don’t like the feeling but I think sometimes I just get so tired of fighting with docs and so on that I break. It is very hard to raise a child with all of A’s needs and I get overwhelmed sometimes. I am sure that you moms out there that have a special child know exactly what I talking about.
I was happy that Dawn was here that day to work with A because I just couldn’t deal with a fussy child that day. I don’t know what it is lately with him or what is going on, but I do know that he really isn’t himself. I think with so much changing for him it is hard for him. With having his implant on he has to deal with all of this noise that he has never had before. He is cutting seven teeth at the same time including molars. Just too many things going on at once. And this fever just won’t go away!
On Monday I tried giving A a bottle with water. He took 30mls within about five minutes and then he started to choke. I have to be very careful doing a bottle as he forgets to breathe/suck/swallow at the same time. So I have to pace him at about every two sucks. Anyhow he did great until he started to choke and then it all came out of his nose! Ugh it was gross and he was NOT happy.
However yesteray I tried a bottle and he took 50mls and kept it all down! I am so impressed with this kid at times that I just want to jump up and down! It is going to be something that I will work on when I feel he can handle it or shows me a sign that he wants to do it. With his reflux and blue spells it is something that I have to be very careful with.
Tuesday grandma was here and we took A to the doctor. He didn’t really say much except to keep an eye on it and if he still has the temperature next week to bring him back for sure. It ranges from 100-101 and no different. I wasn’t really that concerned with it as he doesn’t seem very ill but I wanted to get him checked out. And he said not to assume that a fever is from teething. I don’t think it is that because he has been working on these teeth for so long and never had the fever before.
I know that I myself haven’t been feeling the greatest the past couple of days so maybe it is just some bug that won’t go away! Today is actually the worst day for me so far as I just feel sick to my stomach and like I have a sore throat coming on. Not fun stuff that is for sure!
Monday was Aunt Shorty’s 18th birthday(my sister)! She was doing her own thing with her boyfriend so we got together last night to celebrate and give her gifts. A and I went for dinner with Aunt Shorty, grandma and grandpa. I can hardly believe that she is 18 years old already!
Today Shelly was here to play with A. Deb was also here to do his hearing therapy for a while. She is very happy with how he is progressing and even following sounds around the table when we were doing therapy. He had a new reaction yesterday to the vaccuum! He did NOT like it. Haha it was way too cute. Here are some cute pics from today with her drawing with A.
So I also went today to have my eyes checked. I have been asked so much why I am squinting so I thought I might as well go. Well turns out that I do need glasses but not that I have to wear all of the time. I couldn’t believe how much more clear the letters were that I was reading when she showed me the prescription that I would be getting! WOW I was amazed that for so long I have been thinking things are clear and they really aren’t! I picked out some really funky glasses after about an hour of trying tons on. LOL I’ll be sure to post a picture when I get them.
Well I have some very exciting news! On Tuesday night I was giving A a bath and he rolled from his back to tummy for the very first time! YAY! He is so active in the tub and it happened so fast I couldn’t believe it. I went into a bit of panic mode considering he was face down in the water but I quickly grabbed him and turned him over and he was laughing! So at the age of 25 and a half months he did yet something new to prove that he CAN do it!
So yesterday he was back to his normal self after having a fever on Tuesday and being pretty cranky. However today he is back to the fever, gagging, vomiting and just being plain out fussy. I really don’t know what to think is happening but hopefully it is something that will clear on its own.
Yesterday actually was kind of funny because A was just plain old bored. I could tell by how he was acting that nothing was pleasing him. I had him in my room while I cleaned and he didn’t want to be there. I had him in his room and he didn’t want to be there. I took him for a walk which was okay for a while but not long enough! Finally I decided to pull out his swing which he hasn’t been in for ages! And voila, look at what it did to him!
After a nice little nap he was happy! YAY for the swing. So I have decided to keep it within reach. Funny how after a while of not using something they are really interested again.
Shelly was here today to play with A. He wasn’t really into playing today and just didn’t want to do much. I of course had a doctors appointment so I thought getting him out for a bit might help him. He was not happy! I got through my checkup fine, needle included! LOL I do however have to go and get my eyes checked because I find myself squinting a lot of the time when I am watching TV or reading from afar. Should be interesting.
After coming home I tried to get A to sleep because he was SO tired but he just wasn’t comfortable. I gave him some advil thinking that might help him but it didn’t either. It is so hard when he is sick and I just don’t know how to make him feel better. Finally I took him to my bed and laid down with him. He went right to sleep! What a little stinker. It’s okay though because he isn’t EVER in there at night and I wouldn’t start that habit.
So I can also add to my list of things that I have noticed since A has had his implant activated. Lately he is very pouty and scared of things that he never was before but he also gets upset when I walk away from him. He can be content when I walk into his view but as soon as I walk away he starts fussing. It is kind of cute because I always wondered if he really knew that it was “me” and now I know! He also does this at night when I go into his room. He is fine until I walk away and then he has his pout and cry that just make me want to cry too! I just have a hard time understanding why all of these new reactions were not there without hearing. Seems kind of strange to me.
Well my little man is still not well. I will back up to Monday night. So the new tube was placed on Monday and he had the fever all day of 104. By the night it had gone down so I was happy. Joyce didn’t end up coming so I was kinda bummed about that but hoped for a good night.
WELL, it was far from a good night! A was just not able to sleep at all and was not a happy boy at all. I would have to go in there and hold him for a bit and then put him down, turn on his mobile and run to bed to try and sleep for at least thirty minutes while he was calm. He would end up fussing so much that he was turning right around in his bed. This went on the whole entire night. By 5am I could barely keep my eyes open. He was content enough once again so I headed back to bed. Well he must have been moving like crazy and I just didn’t hear him. Daddy got up to get ready for bed at about 6:30am and I heard him laugh. When he came back in the room I asked what was so funny and he said that A was right turned in his bed underneath all of his toys! Of course he didn’t get a picture before turning him around.
So daddy left at 7:30am for work and A was fussing a little bit but I left him to see if he would go back to sleep. It only lasted about ten minutes so I went in there to get him up. He felt VERY warm to me so I put him into our bed and took his temperature. It was 106.4! I almost had a heart attack! I was panicking and didn’t know what to do. I gave him some Advil and then wiped him down with cool cloths. I waited about thirty minutes and took his temp again. Same.
Anyhow, at about 9am it was down to 105.2. I called the doctor when they opened and asked the secretary to talk to him and see what he thought that I should do. I waited and waited and finally I called there. He had said to keep giving A lukewarm baths and keep up the Advil and Tylenol. He also said that the antibiotic would not have kicked in yet. So I waited it out all day.
A was fussy and would not sleep. I don’t even know how he stayed awake for as long as he did. Finally at about 4:30pm he fell asleep. He didn’t end up waking until about 8pm. I laid beside him and he smiled at me! I could hardly believe it. He was in a much better mood and when I took his temp it was down to about 101. I was so happy!
Joyce came at 10pm and A was okay for a little bit, but you could tell that he was exhausted. She ended up putting him to bed at about 10:30pm and he went right to sleep.
So last night I heard A a couple of times and that makes it hard for me to sleep. I know that Joyce is great, but when your baby is sick it is hard to ignore. When I got up this morning she had him up and he was not a happy boy. She said that he didn’t have a very great night.
She left at 8am and so did daddy for work. I took A’s temp and it was fine. At about 8:30am I got him to sleep again and he didn’t wake up until after grandma got here, it was about 10:30am. He still was not happy and I knew that something was happening. He just wanted to sleep every time that he got up. He did end up sleeping for a good while on grandma.
He has had a ton of his dystonic movements today and it reminds me of when he was having the adverse reaction to the artane before. Now I know that his dystonia will act up more when he is sick, but this is just nuts! Grandma left at 2:30pm and until about 9pm all A did was cry. It was so hard to watch him so upset and yet there wasn’t a thing that I could do for him.
I am wondering if he is having a reaction to the antibiotic that he is on but I don’t really know. There is so much info on the Internet that it is silly for me to really try and get answers on here. A is not the average child and he is so complex that it is always difficult to know what is going on with him. I will have to call the doctor tomorrow and see what he thinks.
He fell asleep at around 9pm and he is still asleep. I’m not even going to bother waking him to give him his puffers. He needs to sleep. When he gets up I will give them to him.
SOOOOOO it has been a long day. I just hope that he gets better. I hate to see him this way. So frustrating and heart breaking.
Now some pics…they start on Sunday night with the bottle! 🙂
Oh, and STILL no vomiting!!! It has now been about 80 hours!! (He did throw up a bit of mucus last night but that is it!)
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!
Well I forgot to post the other day that A is now three ounces away from the big 20 pounds!! I can hardly believe it!
Today I woke up not feeling the greatest. Joyce left at 8am and I crawled back into bed since A wasn’t up yet. To my surprise he didn’t get up until 9:30am so that was nice for me! Grandma was here just after 10am and I did some cleaning that I wanted to get done.
I have come down with a nasty cold and of course I am even more nervous about it all because A never got his RSV shot yesterday since I had to go to Hamilton. They had told me that if I got back to Guelph before 5pm to just bring him in and they would do it, but of course I had to deal with a bunch of bull so I wasn’t home until after that. So he won’t be getting it until Monday and that is almost one week after he is due for it. So my hands are already all sore and red from washing so much and using sanitizer.
Yesterday I had to cancel his appointment as well with his physiotherapist and the lady who was bringing the standing frames. That really bothered me because I have been waiting for what seems like forever to try these out! I received a call last night from Monique saying that the lady who was bringing the frames was in a very bad car accident and the standing frames were actually snapped it half. So, needless to say it will probably be a few more weeks now when we get A into them to try.
Here are a couple of pictures of my little man sleeping today….so cute!
And my little man on his new pillow smiling as usual…
Well today I woke up with a sore throat and just not feeling the greatest. However as the day went by I was able to cope and feel a bit better. Daddy went out for a bit and A had a nap. By the time daddy got back we got ready and headed over to grandma and grandpas for the Superbowl party that they were hosting. Neither J or I like football but we did have a good time. J actually won two rounds of the the betting that we had going on.
About an hour before leaving my ear started to bother me, and by the time we got home I was in tears and nothing I am doing is making it feel better. J put some drops in it for me and then I took some advil and now I am going to be heading to bed.
So lots of pictures.
These last three are of A holding onto a little wind up snowman that he loves. It is one of the few things that he will hold consistently. The second picture you can really see him trying to get it to his mouth!
My poor little boy is sick again. I was hoping that yesterday would have worn off by today but he has just gotten worse. I woke up about 1am to him with major diarrhea. It happened a few more times during the night and he had to have a complete change of clothes each time.
The vomiting and diarrhea persisted all day today and he made me very nervous at times. He tries to hold back when he is vomiting so he goes nice shades of blue. Nerve racking at times even though I am so used to it.
Monique his physiotherapist was supposed to come and work with him this morning but I had to cancel that. There was no way that he would be able to do that stuff in his condition. Grandma ended up coming over instead and gave me a break. It is so hard to see him this way. He hasn’t had a fever all day so that is a good thing or else I would probably have him at the emergency. I can handle almost anything, but when he gets lethargic it just makes me worry that something more severe is wrong. And of course his doctor wasn’t in the office today so I wasn’t able to take him in there to be seen. It has all worked out so far, and Joyce is here tonight so I will be able to get some sleep knowing that he is being watched. It would be very hard for me to sleep with him so sick if she wasn’t here.
Anyways, I have downloaded the software needed for the video camera, but have not gotten the pictures on here yet. Sorry!
So instead, I thought that I would post some from one year ago. It is always exciting to look back and see how far A has come!
One year ago today…I remember it like yesterday. J and I got to Hamilton around 3pm and Danielle was cuddling with A. She was looking at me funny and smiled. She had asked if I was ready for some good news. That is when she told me that we were going into care by parent the next week! I started crying and then J had finished washing his hands and I told him. We were both so happy and scared at the same time. It had been a long time coming. He had the first set of his shots and his polyvisol had been discontinued. There was talk of changing his g tube to a button instead of the big ugly tube that he had but that would be discussed in the meeting with Dr.Watts the following week.
I gave A a bottle for his 8pm feed and he took 110ml which was great for him. Marg was on the night shift and we bathed and weighed A. He was 7lbs 13oz. So he has gained 11lbs 8oz since then! Crazy!(Oh, and the pictures are actually from a year ago yesterday.) And the cute little outfit is one of the two that Danielle had bought him for Christmas. It is so tiny that when I look at it now I can’t even believe that he wore it!