Just a quick update as I don’t really have time and I have SO many people asking where we have been. A is currently in the ICU on a ventilator. Doctors believe at this time that he is fighting a double pneumonia. I will update as things happen. Please pray for him.
Well a year ago today was when A heard for the first time!!!! I cannot believe that a year has gone by already because it feels like yesterday that we were all really excited about getting him “turned on”. The cochlear implant is the best thing that has been done for him yet. I am so amazed at how well he has done and how he hears EVERYTHING!!!! I am still getting him to work on saying mama but it hasn’t happened yet! LOL
Some more exciting news about A. He got his first haircut two days ago!!! Mommy finally gave in and cut it off. Daddy and I did it together and I have to say that I am VERY happy with the results!!! He looks so much older and more like a little man.
That is about all of the exciting news around here. A continues with his episodes at night and continues with turning blue during the day. I happy to say that FINALLY the team at Sick Kids replied to my email that I sent two weeks ago Friday. They are concerned and want to see him in clinic. I emailed them back asking what their thoughts were and what the plan was because I wasn’t going to waste my time going to Toronto so that we could sit there and look at each other. As well I told her that I wanted the date for his next sleep study, ENT followup and genetics.
Now, just needing all you guys to pray again. Auntie A (my brothers fiance) is in ICU right now and is very sick. She was diagnosed about 8-10 weeks ago with cardiomyopathy with a heart function of 20. Well she is now at 17 and is having a tough time. I’ll tell you though, her spirit is AMAZING!!!! She is only 25 years old and needs all the prayers she can get right now. Thanks everyone.
Well this weekend was very busy but VERY fun!!! On Friday night we had our stag and doe which went amazing!!! We made a TON more money than we even thought which will really help us out around here. The turnout was great and everyone had a good time. Here are some pics from Friday night…
My bridal shower was on Sunday at my mom and dads place. There was so many people and so many great gifts!!!! I don’t have any pics yet uploaded from then so I will post those in a couple of days.
I had a nice surprise visit today from my friend Vickie and her two daughters Sophia and the new baby Ava. Hopefully we can get together with all three soon…been SO long since we have seen Alina!!!
I’ll tell you, I could not get over how small Ava was and she is about 12lbs!!!! I don’t even remember A being that little. He wasn’t too impressed with mommy holding a baby. And when Ava cried there were a few pouts. He better get used to it because hopefully one day he will get to be a big brother!!!
Just a quick post for thoughts and prayers for a dear family I have met here at the hospital. Their little girl is four years old and has SMA. She has been in critical care for just over a month. They took her home today around noon and she will be taken off of the vent at home after spending a couple of hours with mommy and daddy. Little Ally will be earning her angel wings this afternoon. Ally is an adorable little girl who has fought for so long and so hard. I cannot even imagine making the decision her parents have. They are two very wonderful people.
Fly high little one! A beautiful angel you will be. *HUGS & KISSES*
Well nothing new is really happening here. I went home on Thursday night and didn’t come back until Sunday morning! I wasn’t planning on staying that long but the nurses that I had on were wonderful and knew that I needed the break. It will be eight weeks tomorrow that we have been here! And really we aren’t much further ahead than when we started. The only real change has been the fundo and g tube placement. I have to tell you again how impressed I am with how well he is doing with this! I was so anti fundo and it has truly been awesome!
I was able to book the photographer and the DJ while I was home (whole reason I went home) so I don’t have to worry anymore about that. I can’t wait until the day that I get married!!! J and I have been through SO SO SO much together and we have been able to overcome all the bumps in the road. And to top it off we have the most AMAZING son in the world who has changed our lives in ways that we never could have imagined!! Good and bad LOL
So I am waiting to see IGT to discuss more about the botox. And there is one guy in particular that I know in IGT and he is NOT going to be anywhere near A for the botox. He had issues putting a gj tube in and *I* had to tell him that it wasn’t right. So there is NO way that he is injecting botox into saliva glands!!!
I also spoke yesterday for quite a while to A’s nurse practitioner. I told her once again that I would really really like to see genetics. I remember this coming up a LONG time ago when we were in the NICU but it never came to anything. And I have been bugging since we have been here. So finally she agreed to it because there IS the possibility Ashton could have some sort of genetic mutation which means that if I was to have another child they could have the same issues. And I told her that I know a few moms that didn’t get things looked into until they had their second child who started to present with the same issues as the first. I also said that I would be pretty upset if this were the case when I had asked to see genetics many many times. I want to be able to make an informed decision. Now I truly hope that this isn’t the case but maybe genetics might help us lead in a way that could be helpful.
Please say a special prayer for our little friend Ryan…he is on life support and not doing well. He was born at 28 weeks and was just diagnosed in September with mito.
Well I have to say (without jinxing anything!) that A has been VERY good the past two days, including today. I went home on Friday night (only the third time in almost 7 weeks) as I had to go and get my wedding dress! I could not keep putting it off as it can take up to 8 months to get in and I only have under 6 months left! The owner of the store though said she would work miracles for me. So before heading home for the night I had requested a certain nurse for the night and then the one for the day yesterday. This was the ONLY way that I was leaving as I knew that they would take great care of him.
Friday night Aunt K and Grandma S came up so that they were able to come along with Aunt Shorty, Grandma C and I. I did end up getting the same dress that I had first tried on in October. I absolutely know that it is MY dress and can’t wait for the day that I get to wear it and walk down the aisle.
Saturday my heart went to my feet because I got a call from the hospital in the morning. It was the doctor that is on for the weekend for complex care. He was asking me about the NPT tube (nasal trumpet) that we had discussed on Friday. Before I left Friday night I told them that I wanted to be here if they were to do it because I felt that I would be the best judge on whether or not it was working. Anyhow he wanted to know if it was okay to put one in if he felt A needed it. So I told him exactly what I told them Friday night. Well he then said “well you aren’t here 24/7 to judge it anyways.” Now I have to say that I wish I had of responded, however I think I was so shocked by what he said that by the time I would have he was already talking again. I should have said, “listen buddy, I AM there 24/7…this is the third time that I have been home in almost 7 weeks. How many weekends have A and I spent just hanging out and then the ONE weekend that you guys want to move your asses and do something I am at home?!?!??!” Oh I was just so angry!
Anyways, A never had to have the nasal trumpet placed and he had a wonderful day yesterday while I was out. Daddy and I got here last night about 10pm and gave him a bath before he went to bed. We then headed over to the hotel for the night. Today was a GREAT day for him and he was VERY happy and seemed like he was back to his old self. I just don’t want to get to excited as we all know how A doesn’t play by the rules. He also came off oxygen today at noon and is STILL off. This past hour he has been desatting quite a bit so we will see, but so far so good. I am MUCH better with seeing 70-80s then I am seeing single digits or 20s! He only had two big desats today and those were both with crying.
Well I am off to bed…everyone keep those prayers coming!!!
Well the big day is Monday at 8am for his fundo! I found this out just after I had done my last update. I am still very nervous but I have a lot of confidence in the surgeon that agreed to do it for me. Please everyone say a prayer for A that the procedure goes well!
Today at noon he is having an ng tube put in and then at 2pm we go down for his milk scan to check for delayed gastric emptying. They will be giving him 30mls over 10 minutes and I just hope and pray that he has no delayed emptying at all!!! If he does then they will have to do another procedure while doing the fundo where they make an incision to help the stomach empty faster. However this can then cause dumping syndrome and wouldn’t be a good thing.
Now for some other great news. A is now under care of the complex care team here at this hospital. I struggled with the decision at first because I really have had everything done that I wanted with the team that is on. However they are done in two weeks and then it would be a new team. So this way the complex care team will follow him no matter where in the hospital he is and even after we are released. I feel really lucky to have this option because this team only has so many spaces for kids and they agreed after speaking with me yesterday that they would take him on.
I talked to the main doctor for a good hour and was very impressed with him. I voiced my concerns about how I worry that the plan we have in place won’t happen but he assured me that all would work out the way that it should. It was kind of a difficult conversation because we spoke a lot about if the fundo doesn’t work, about the trach, the vent and then care if he became very ill. He did ask me what I would want done for A if he was really sick but I told him that I can’t answer that because it is something that I would have to be dealing with at the time to know. It is so hard to think of all of these things that the docs are speaking of. Sometimes I feel like A won’t ever be coming home again. I have been loving him every minute of everyday and taking a ton of pictures. I am a worry wart so this doesn’t help matters!
When speaking to this doctor as well he wanted to know what a bad day looked like for me. How I handle things. If I struggle. How dad does. I think he was pretty shocked when I told him that I feel like I have always known that I would have a child with special needs. How I can’t imagine A being any other way. He told me that Ashton sounded like he was very lucky to have me as a mother and how he thought that we were a perfect fit.
Perfect? I totally agree.