Update & Apologies!
I am SO very sorry for not posting in such a long time.
I actually have a couple "draft" posts that I have lingering which obviously never got finished.
There has been so much going on in my life that I have failed to make the time to do what I loved doing and that is update my blog. Days pass and I tell myself that I need to blog, but when I grab my computer I don't click the link to update.
My last post was about the death of 2 other Trisomy babies and honestly I was emotionally and mentally drained. This journey as I've always stated isn't easy and it can be a toll on a person. You will go through a million emotions from one minute to the next. The hours in a day seem to fly by with each minute, second that passes a new emotion.
I had been having a rough time emotionally because I'd been feeling very guilty about some of the decisions I made with my life; past and present.
In talking to different people I have come to realize that the sense of guilt isn't just a Trisomy mother thing, it's a universal feeling that many mothers get from time to time.
I feel like I'm in a race against time to accomplish some things that I've set as goals for myself and I never want my daughter to feel like I don't care about her. Honestly, the things I'm trying to do are for her. I want to make sure she has the best life I am capable of giving her; so I sacrifice at the moment. Sometimes though in those "moments" feelings of guilt & failure sneak up on me, so I wasn't really dedicated to blogging like I was previously.
I realize that there are those who don't use social media so this blog is the space where you were able to keep up with Mylah's progress. Please accept my sincerest apologies. I appreciate all the support that I've received through the blog and I will commit to updating at least once a week.
This blog served as my open diary and it did help in getting those emotions out in the open which helped lift the weight I felt I carried at times.
What have we been up to?
A lot!
Mylah is talking so much!! Especially at night. She waits until about 9:30 then she just starts rattling on & on. It's one of the sweetest sounds I have ever heard.
She's 14 months now! almost 14 lbs and 26 inches long. She's all legs.
Her last cardiology appointment went really well. She is off her Sildenafil and her pulmonary hypertension is not an issue. We had started to wean her months ago. The cardiology team doesn't want to see her for 6 months. Which is great! One medication down 5 to go!
Wednesday we went to our vent clinic appointment. Mylah was previously getting 36 breaths per minute (bpm) from the machine which was weaned down to 20 bpm in March. Her respiratory therapist has since weaned her down to 16 bpm and she is allowed to be totally free from the machine for 1-2 hours a day twice a day. If she tolerates this well, we've been advised to increase each week. This was HUGE news for us! I was honestly happy with her progress and went to the appointment not expecting any changes as drastic as what we received. She seems to be adjusting to the changes quite well.
Mylah's look is also changing. She's starting to look more like a toddler than a baby. It's bittersweet.
Often times you hear mothers say "oh I wish they could stay this little forever". I've actually had a piece of that "forever". Although she's approaching 15 months, she's the size of a baby that's about 5 months. I grown accustomed to her small size, to see her changing into this "little girl" makes me sad, but its happiness too. She's growing; still slowly, but that's all that matters.
We've figured out that Mylah isn't really a people person and doesn't like to be out for long periods of time. Her Diva-ness starts to show after about 2 hours out. She just will have to get used to being on the go because that's what her summer will be like. We missed most of the summer last year in the hospital so we will be making up this year!
Thank you for continuing to follow our journey. Thank you for taking a few moments out of your busy day to check up on our daughter.
We love & appreciate you!
I actually have a couple "draft" posts that I have lingering which obviously never got finished.
There has been so much going on in my life that I have failed to make the time to do what I loved doing and that is update my blog. Days pass and I tell myself that I need to blog, but when I grab my computer I don't click the link to update.
My last post was about the death of 2 other Trisomy babies and honestly I was emotionally and mentally drained. This journey as I've always stated isn't easy and it can be a toll on a person. You will go through a million emotions from one minute to the next. The hours in a day seem to fly by with each minute, second that passes a new emotion.
I had been having a rough time emotionally because I'd been feeling very guilty about some of the decisions I made with my life; past and present.
In talking to different people I have come to realize that the sense of guilt isn't just a Trisomy mother thing, it's a universal feeling that many mothers get from time to time.
I feel like I'm in a race against time to accomplish some things that I've set as goals for myself and I never want my daughter to feel like I don't care about her. Honestly, the things I'm trying to do are for her. I want to make sure she has the best life I am capable of giving her; so I sacrifice at the moment. Sometimes though in those "moments" feelings of guilt & failure sneak up on me, so I wasn't really dedicated to blogging like I was previously.
I realize that there are those who don't use social media so this blog is the space where you were able to keep up with Mylah's progress. Please accept my sincerest apologies. I appreciate all the support that I've received through the blog and I will commit to updating at least once a week.
This blog served as my open diary and it did help in getting those emotions out in the open which helped lift the weight I felt I carried at times.
What have we been up to?
A lot!
Mylah is talking so much!! Especially at night. She waits until about 9:30 then she just starts rattling on & on. It's one of the sweetest sounds I have ever heard.
She's 14 months now! almost 14 lbs and 26 inches long. She's all legs.
Her last cardiology appointment went really well. She is off her Sildenafil and her pulmonary hypertension is not an issue. We had started to wean her months ago. The cardiology team doesn't want to see her for 6 months. Which is great! One medication down 5 to go!
Wednesday we went to our vent clinic appointment. Mylah was previously getting 36 breaths per minute (bpm) from the machine which was weaned down to 20 bpm in March. Her respiratory therapist has since weaned her down to 16 bpm and she is allowed to be totally free from the machine for 1-2 hours a day twice a day. If she tolerates this well, we've been advised to increase each week. This was HUGE news for us! I was honestly happy with her progress and went to the appointment not expecting any changes as drastic as what we received. She seems to be adjusting to the changes quite well.
Mylah's look is also changing. She's starting to look more like a toddler than a baby. It's bittersweet.
Often times you hear mothers say "oh I wish they could stay this little forever". I've actually had a piece of that "forever". Although she's approaching 15 months, she's the size of a baby that's about 5 months. I grown accustomed to her small size, to see her changing into this "little girl" makes me sad, but its happiness too. She's growing; still slowly, but that's all that matters.
We've figured out that Mylah isn't really a people person and doesn't like to be out for long periods of time. Her Diva-ness starts to show after about 2 hours out. She just will have to get used to being on the go because that's what her summer will be like. We missed most of the summer last year in the hospital so we will be making up this year!
Mylah is doing better than ever. She's growing, maturing, developing her own attitude, and yes still defying odds every day.
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| Mylah before shopping… |
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| Mylah AFTER shopping.. LOL |
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| What do you think? |
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| & she did just that….. |
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| I guess we did huh Mylah? |
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| Definitely GOD's Little Blessing all for us! |
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| Such a BIG Girl! |
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| Mother's Day 2013! |
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| Sleeping Beauty |
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| EKG time… |
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| She most certainly is! |
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| Mommy's little angel |
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| I LOVE some of her facial expressions! |
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| A.D.I.D.A.S. |
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| Those hands are ALWAYS busy… |
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| So excited to head to her 8:30 am vent clinc appointment… Can't you tell? |
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| Where's that baby face at???? |
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| It's time for BED Mylah.. not playing! |
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| Mylah… June 2013 14 months Trisomy 18 SuperKid! |
Thank you for continuing to follow our journey. Thank you for taking a few moments out of your busy day to check up on our daughter.
We love & appreciate you!
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