Yep, that's right, she's officially a toddler now! She has been taking a step here and there, but on Thursday evening, January 24, Faith walked all on her own, about 5 feet. Since then she is walking more and more and she is really getting the hang of it. Although I'm excited to see her conquering new abilities, I have to admit, I feel the loss of her not being my "baby" anymore.
Even so, it helps us see her as stronger and being able to do more, so it should start giving us a lot more freedom to get her out of the house. This summer should be lots more fun doing things with both Anthony and Faith - like the park, the pool, story time at the library, etc. And it will be good for Fred and I to be able to start getting out on the weekends as a family instead of always splitting up and one of us staying home with Faith while the other takes Anthony somewhere.
Today was such a nice day that we took them both to the park - Faith got to go in the swing and down the slides, she definitely was having fun and Anthony got to bring a new toy that shoots a spinning disc high up in the sky.
Alright, I'm really going to try today to see if I can upload a video of Faith today!
Love,
Robin
Sunday, January 27, 2008
Thursday, January 17, 2008
Nurses come and nurses go...
In November we had to let a nurse go for the second time - it's always a tough decision, because there's always good things about every person and you hate to affect someone's job, but after having lots of little annoyances and then some major frustrating incidents we finally reached a point where it was too uncomfortable to keep her in our home, so we discussed it with the nursing company and they immediately took her out and found us a new nurse, Maria. Maria started around the beginning of December and immediately Faith became attached to her and we realized she was a perfect fit with our family - very caring, soft spoken and gentle, and also just good at knowing how to give us our space in the house (that is not an easily found trait!!). Anyway, on Tuesday the company called and said they needed to move Maria to another home. I was so upset and I just went on and on to the woman who called to tell me. But all to no avail, so today a new nurse, Lindsey, came to orient with Lisa (Faith's primary nurse). She's a fresh RN just out of school last spring, without any hands-on trach experience, so that part is disappointing, but she seemed very friendly and hopefully she will be able to learn the trach care stuff quickly and be able to handle an emergency - after all, we were taught how to do it, and she has all the nursing skills already, so hopefully this isn't a big stretch for her. Maria will work a couple more weeks for us and then Lindsey will take over in February.
We still have Lisa as well, who has been with us since March and is such a great fit. Lisa also had to cut her hours back with us from 40 to 20 to take another job with better benefits and pay, which we totally understood even though we were bummed to lose her for those hours.
We're hoping this works out well for Faith especially but also for us and especially Fred who is home all day and has to give up his privacy/freedoms. I just read a note from another mom whose son just got his trach tube removed and she was excited about gettting her privacy/freedom back in her home "to go to the kitchen in her underwear" if she wanted to!
Well, its late and I'm falling asleep as I try to finish this, so I better get off to bed and ready for another day of work tomorrow.
Love,
Robin
We still have Lisa as well, who has been with us since March and is such a great fit. Lisa also had to cut her hours back with us from 40 to 20 to take another job with better benefits and pay, which we totally understood even though we were bummed to lose her for those hours.
We're hoping this works out well for Faith especially but also for us and especially Fred who is home all day and has to give up his privacy/freedoms. I just read a note from another mom whose son just got his trach tube removed and she was excited about gettting her privacy/freedom back in her home "to go to the kitchen in her underwear" if she wanted to!
Well, its late and I'm falling asleep as I try to finish this, so I better get off to bed and ready for another day of work tomorrow.
Love,
Robin
Wednesday, January 16, 2008
PMV trials
It was so cool!!! We took Faith to see Dr. Guarin yesterday to test out her new PMV (Passy Muir Valve) and she did really well with it! I did bring the video camera and Kim (speech language pathologist) was kind enough to video it for me.
First Dr. Guarin wanted to show me how to use something else - a new trach connector for giving Faith inhaler treatments which just happened to make a whistle sound when Faith tried it out. Faith thought that was pretty funny and wanted to keep doing it (we didn't tape that since it wasn't really why we were there, but too bad since she was pretty cute about it).
Then, after checking her pulse oxygen level, we put on the PMV and Faith acted like it was nothing, no big deal, didn't bother her a bit and then slowly she started realizing she could make more sounds than normal with it on and she just got louder and louder and louder and we were all laughing and Kim started tearing up!! She wanted to know why it wasn't making me tear up, but it wasn't the first time I had heard it -- I had been plugging her trach with my finger while she was exhaling for a couple weeks now and I knew how much of a difference it made. I was only afraid my expectations/hopes were going to be too high, as I have heard many stories about other children not tolerating the valve and blowing it right off. Faith loved having the valve on and being able to play with her voice and was upset when we took it off. We are only trying it out twice a day for 5 mins the first day, 10 the 2nd, 15 the 3rd and then we can move up in 15 min increments, to 30 mins, 45, etc. But I think within a couple of weeks Faith might be wearing the valve full time! We did the second 5 minute trial last night at the dinner table and Faith loved it again and we realized she is going to give both Fred and Anthony a run for their money on being the loudest Kargoll in our house! How crazy is that when you remember she couldn't make any sound for the first few months of her life!! We will never forget her early Dolphin sounds and luckily those are caught on tape as well.
I will have upgrade my Babysite account so I will be able to post videos!! I promise to give that a try this weekend.
By the way, you all are way to kind about my website skills - this whole website format is completely provided by Babysites and I'm just adding the text and pictures. This is so easy, all of you could do it - and it's free (until I upgrade anyway, but even that is cheap - just a small annual fee).
Love from all of us!
P.S. I wanted to share something very special about this Passy Muir Valve - I learned that it was invented by a young man in his 20s, a quadriplegic, David Muir, who suffered from muscular distrophy and eventually had to be trached and ventilated. His story is truly amazing, please check it out on www.passy-muir.com and go to the about us section. He is another amazing example of how people with severe disabilities in life have a capacity to succeed in life that makes me certain that Faith's disabilities will also become her strengths.
First Dr. Guarin wanted to show me how to use something else - a new trach connector for giving Faith inhaler treatments which just happened to make a whistle sound when Faith tried it out. Faith thought that was pretty funny and wanted to keep doing it (we didn't tape that since it wasn't really why we were there, but too bad since she was pretty cute about it).
Then, after checking her pulse oxygen level, we put on the PMV and Faith acted like it was nothing, no big deal, didn't bother her a bit and then slowly she started realizing she could make more sounds than normal with it on and she just got louder and louder and louder and we were all laughing and Kim started tearing up!! She wanted to know why it wasn't making me tear up, but it wasn't the first time I had heard it -- I had been plugging her trach with my finger while she was exhaling for a couple weeks now and I knew how much of a difference it made. I was only afraid my expectations/hopes were going to be too high, as I have heard many stories about other children not tolerating the valve and blowing it right off. Faith loved having the valve on and being able to play with her voice and was upset when we took it off. We are only trying it out twice a day for 5 mins the first day, 10 the 2nd, 15 the 3rd and then we can move up in 15 min increments, to 30 mins, 45, etc. But I think within a couple of weeks Faith might be wearing the valve full time! We did the second 5 minute trial last night at the dinner table and Faith loved it again and we realized she is going to give both Fred and Anthony a run for their money on being the loudest Kargoll in our house! How crazy is that when you remember she couldn't make any sound for the first few months of her life!! We will never forget her early Dolphin sounds and luckily those are caught on tape as well.
I will have upgrade my Babysite account so I will be able to post videos!! I promise to give that a try this weekend.
By the way, you all are way to kind about my website skills - this whole website format is completely provided by Babysites and I'm just adding the text and pictures. This is so easy, all of you could do it - and it's free (until I upgrade anyway, but even that is cheap - just a small annual fee).
Love from all of us!
P.S. I wanted to share something very special about this Passy Muir Valve - I learned that it was invented by a young man in his 20s, a quadriplegic, David Muir, who suffered from muscular distrophy and eventually had to be trached and ventilated. His story is truly amazing, please check it out on www.passy-muir.com and go to the about us section. He is another amazing example of how people with severe disabilities in life have a capacity to succeed in life that makes me certain that Faith's disabilities will also become her strengths.
Monday, January 14, 2008
Cardiology appointment went well today
We got some great news today - Faith's two tiny holes in her heart (VSDs or Ventricular Septal Defects) have closed! This is actually very common for babies to be born with VSDs and for them to close on their own within the first year of life. The cardiologist said she has no cardiac issues now and we do not need to see him again unless something arises that we are concerned about.
The nice thing about Goldenhar Syndrome is that it is not progressive or degenerative, so there shouldn't be new health issues that weren't there when she was born (although there's a chance that we haven't found everything yet, like we haven't had a full spinal x-ray to see if she has any spinal defects - but nothing is suspicious at this point).
I can't wait for our appointment with the pulmonologist tomorrow to try out Faith's new Passy Muir Valve (PMV) on her trach. I'm thinking about bringing the movie camera to capture how she responds! Will definitely post again tomorrow night.
Until then,
Robin
Wednesday, January 9, 2008
"HI!"
That's what Faith SAID yesterday!! It's her first spoken word. She's been making a lot of sounds lately, especially just screaming to hear how loud she can be, but on Saturday when we had a speech therapy session with Kim (speech language pathologist) we talked about working on that being her first word since the "i" part of Hi is a sound she makes frequently and easily and really I've thought she has made the sound "hi" before, if you are willing to consider something close. Speaking her first word is one of the goals we set on her "service plan" during this 6 month cycle that ends in March. (Faith is evaluated every 6 months for developmental progress/delays and goal setting for the support services she gets through the state).
I wasn't home when she did it yesterday, but from what I heard the big difference is that she meant it as "hi" and was waving while saying it. When I got home, Fred said "Faith has something to TELL you" but she would only wave or sign Hi to me, she didn't say it again - you know how kids won't show off when you want them to!
Anyway, this is so exciting! Faith has become so vocal lately, she likes to coo and scream and I even heard heard singing along with a musical toy once recently!! :) I have tried covering her trach while she is exhaling with my finger and she will vocalize for the entire length of her exhale instead of more bursting noise she does on her own. So, our next step is to get her a "Passy Muir Valve" (PMV) that is a one-way valve that only allows her to breathe in through her trach and then exhale through her mouth. I'll certainly post an update and a picture of her with it on once we get it and start trying it out.
I have heard other parents say their trached kids can speak fine over their trachs with the PMV (although many have oral anatomy issues like Faith's jaw or cleft palates that make certain sounds difficult) and I'm starting to believe Faith will start making huge strides over the next year.
Changing topics, Anthony was sick yesterday - he seemed fine in the morning, and it was his first day back at school after weeks of being on break, but I guess shortly after he got to school he told them he was tired (and that he got up really early - but he does that every day!) and cold, so they let him go lie down in the "cozy corner" on a bean bag with a blanket. By the time Fred got there to pick him up he was sound asleep and running a fever. It got up to about 102 in the evening, but it broke overnight and he seems fine today. Sounds silly, but I really enjoyed getting some quiet cuddling time with him!
More later, hope everyone's week is going well!
Robin
I wasn't home when she did it yesterday, but from what I heard the big difference is that she meant it as "hi" and was waving while saying it. When I got home, Fred said "Faith has something to TELL you" but she would only wave or sign Hi to me, she didn't say it again - you know how kids won't show off when you want them to!
Anyway, this is so exciting! Faith has become so vocal lately, she likes to coo and scream and I even heard heard singing along with a musical toy once recently!! :) I have tried covering her trach while she is exhaling with my finger and she will vocalize for the entire length of her exhale instead of more bursting noise she does on her own. So, our next step is to get her a "Passy Muir Valve" (PMV) that is a one-way valve that only allows her to breathe in through her trach and then exhale through her mouth. I'll certainly post an update and a picture of her with it on once we get it and start trying it out.
I have heard other parents say their trached kids can speak fine over their trachs with the PMV (although many have oral anatomy issues like Faith's jaw or cleft palates that make certain sounds difficult) and I'm starting to believe Faith will start making huge strides over the next year.
Changing topics, Anthony was sick yesterday - he seemed fine in the morning, and it was his first day back at school after weeks of being on break, but I guess shortly after he got to school he told them he was tired (and that he got up really early - but he does that every day!) and cold, so they let him go lie down in the "cozy corner" on a bean bag with a blanket. By the time Fred got there to pick him up he was sound asleep and running a fever. It got up to about 102 in the evening, but it broke overnight and he seems fine today. Sounds silly, but I really enjoyed getting some quiet cuddling time with him!
More later, hope everyone's week is going well!
Robin
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