What's new
Fantasy Football - Footballguys Forums

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

RIP Riley (1 Viewer)

When you're going through tough times every day to day obstacle can seem like an impossible mountain.  But positivity is an incredible thing and she's a tough little chick.  Onward and upward.

 
Sounds like Riley's starting to settle into a normal routine.  I doubt you, or any of us, ever thought normal would ever sound so sweet.  Good for you and your amazing family Shady.  Continued great health to you all.

 
I haven't updated in awhile and I thought everyone deserved some updates.

1. The stitches were removed from her wound on Tuesday and it looks completely healed.

2. They increased her anti-seizure dose only because her levels were too low for her weight.

3. She is still on the maintenance dose of the steroid although she had her cortisol levels checked again (they were low two weeks ago). Dont have those results yet

4. She has stopped spitting up entire bottles. Still doesnt have a great appetite. Usually eats 3oz every 3 hours. Babies her age typically eat 4oz. That being said, she is still gaining weight.

5. Her skin rashes is SLOWLY healing. This will take a lot of time (usually gone by age 1).

6. Early Intervention coordinator finally came to the house. We will have her evaluated now.

7. She had another eye exam at the opthamologist and they said everything looks good. That being said, I am being a strong advocate for her vision and spent a few hours today looking for a retinal specialist that sees children. The protocols for this disease HIGHLY recommends a retinal specialist examine the baby at an early age.because a retinal specialist will often see things a normal opthamologist might miss such as abnormal vessel growth. Blindness can happen with this disease if not caught early.

8. Justin absolutely adores his sister. Always wants to kiss and hold her.

It has been an exhausting yet rewarding few weeks. Riley is doing great right now.

 
shadyridr said:
I haven't updated in awhile and I thought everyone deserved some updates.

1. The stitches were removed from her wound on Tuesday and it looks completely healed.

2. They increased her anti-seizure dose only because her levels were too low for her weight.

3. She is still on the maintenance dose of the steroid although she had her cortisol levels checked again (they were low two weeks ago). Dont have those results yet

4. She has stopped spitting up entire bottles. Still doesnt have a great appetite. Usually eats 3oz every 3 hours. Babies her age typically eat 4oz. That being said, she is still gaining weight.

5. Her skin rashes is SLOWLY healing. This will take a lot of time (usually gone by age 1).

6. Early Intervention coordinator finally came to the house. We will have her evaluated now.

7. She had another eye exam at the opthamologist and they said everything looks good. That being said, I am being a strong advocate for her vision and spent a few hours today looking for a retinal specialist that sees children. The protocols for this disease HIGHLY recommends a retinal specialist examine the baby at an early age.because a retinal specialist will often see things a normal opthamologist might miss such as abnormal vessel growth. Blindness can happen with this disease if not caught early.

8. Justin absolutely adores his sister. Always wants to kiss and hold her.

It has been an exhausting yet rewarding few weeks. Riley is doing great right now.
Click to expand...
 Justin is awesome.

#teamriley

 
shadyridr said:
Riley will be 12 weeks old tomorrow and still hasn't smiled yet. :(
Click to expand...
A quick google says the first real smile usually comes between 6 and 12 weeks, so with all she's been through you need to not worry about hitting the milestones that babies who haven't gone anywhere near what Riley has gone through will hit. Be vigilant as you are about her eyesight, but don't stress about normal milestones. Nothing in Riley's 3 months has been normal. All you can do is work to prevent anything that you can actually prevent, but I'm sure you know that there will be things you can't prevent. She's done an amazing job just getting to where she is and I'm sure you guys will continue to do everything you can to keep her progressing.

 
stbugs said:
A quick google says the first real smile usually comes between 6 and 12 weeks, so with all she's been through you need to not worry about hitting the milestones that babies who haven't gone anywhere near what Riley has gone through will hit. Be vigilant as you are about her eyesight, but don't stress about normal milestones. Nothing in Riley's 3 months has been normal. All you can do is work to prevent anything that you can actually prevent, but I'm sure you know that there will be things you can't prevent. She's done an amazing job just getting to where she is and I'm sure you guys will continue to do everything you can to keep her progressing.
Click to expand...
I agree with everything you wrote but its harder to do than it sounds.

 
shadyridr said:
I agree with everything you wrote but its harder to do than it sounds.
Click to expand...
No doubt, hopefully it just helps hearing it. I count my blessings that I have 3 healthy boys and I pray to god that they never have to go through anything like that. Dealt with enough cancer lately with my wife's parents (mom passed, dad living with us with stage 4 lung cancer with maybe months left?) to know how you can go from normal to having your life just be different every day. What you've gone through with a child was way, way tougher and you had your MIL at the same time. It's way harder, but you've just got to keep going.

 
shadyridr said:
Yeah I did think of that, so basically she would be 7 weeks behind. I can live with that.
Click to expand...
She was going through a lot of physical trauma the whole time she was there that her body needed to repair, right up until discharge (and beyond) with the lesion. At the very least, you shouldn't be counting until she started to put on weight.  She's still kicking ###.  Just sucks to have to wait - but it's worth it.

 
she might not like you... so there's that. 

really happy to read these updates, shady. still can't imagine going through everything you've been going through... and can't wait to hear the oncoming and continued happier updates. (and riley smiles).

 
shadyridr said:
Yeah I did think of that, so basically she would be 7 weeks behind. I can live with that.
Click to expand...
my nephew who was under 3 lbs at birth, premie twin, is late on everything.  losing teeth, walking, crawling, growing, everything.  he's on roids now and growing like a weed.  he's 9, i've mentioned him before and he's a fearless hell raiser.  love the little ####er, gets hurt all the time.

 
Yankee23Fan said:
How's the FFA's little warrior doing?
Click to expand...
Our biggest stress now is she is not really gaining much weight. Only 10lbs, 8oz right now. Her problem is multiple things: sleepy a lot, weak suction, and spits up entire bottles at times. We are lucky if we get 20 oz in her a day and she should really be up to 25 oz. She has an appointment for a swallow study in early September.

She was evaluated by a physical therapist, occupational therapist, and speech therapist and they all seemed to think she will be approved for Early Intervention. We are waiting on their final report, they have 30 days which is next Monday. Can't wait to get the services started. Physical therapist showed us some exercises but showed us the right side weakness. She had problems lifting her head at tummy time. Occupational therapist says she has problems tracking, she still hasn't smiled, nor grasped at or held toys. Speech therpist mentioned the weak suction and showed us some techniques to massage her cheeks.

She had an EEG last week that showed some spikes but no seizures. Neurologist gave her B6 vitamin along with increasing the dose of phenobarbital again. Her head size is very small, dont even think its on the charts.

She visited a retinal specialist last week as well and they are doing a fluorescien angiogram, exam under anestheisa, and possible laser if any abnormal blood vessels are found (this is possible with IP).

On top of all that, she has pink eye now.

So yes, fun times indeed but I am just so grateful she is alive and I love my little red head so much.

 
hoping for speedy, and hassle-free access to that early intervention, shady. and to no pink eye. how did I miss that she's a ginger?

how are you holding up?

 
shadyridr said:
Our biggest stress now is she is not really gaining much weight. Only 10lbs, 8oz right now. Her problem is multiple things: sleepy a lot, weak suction, and spits up entire bottles at times. We are lucky if we get 20 oz in her a day and she should really be up to 25 oz. She has an appointment for a swallow study in early September.

She was evaluated by a physical therapist, occupational therapist, and speech therapist and they all seemed to think she will be approved for Early Intervention. We are waiting on their final report, they have 30 days which is next Monday. Can't wait to get the services started. Physical therapist showed us some exercises but showed us the right side weakness. She had problems lifting her head at tummy time. Occupational therapist says she has problems tracking, she still hasn't smiled, nor grasped at or held toys. Speech therpist mentioned the weak suction and showed us some techniques to massage her cheeks.

She had an EEG last week that showed some spikes but no seizures. Neurologist gave her B6 vitamin along with increasing the dose of phenobarbital again. Her head size is very small, dont even think its on the charts.

She visited a retinal specialist last week as well and they are doing a fluorescien angiogram, exam under anestheisa, and possible laser if any abnormal blood vessels are found (this is possible with IP).

On top of all that, she has pink eye now.

So yes, fun times indeed but I am just so grateful she is alive and I love my little red head so much.
Click to expand...
I'm envisioning a post from you about 5 years rom now that goes something like this....

"Haven't seen it yet.  Tried to get the family ready to go to get there in time for previews, but Justin was playing Call of Duty 10 and had his VR headset on and wasn't listening, and Riley was singing and dancing in the living room and refused to stop.  Tried to get her shoes on her mid dance and ended up falling down and twisting my arm a little so I needed to ice it and we just never made it.  Wife thinks I'm a baby, Justin still hasn't taken that headset off, and if I hear Riley sing this song one more time i might go insane."

And then we will bump this thread for you.  And you will laugh.  

And tim will be on book #3 in his list.

 
El Floppo said:
hoping for speedy, and hassle-free access to that early intervention, shady. and to no pink eye. how did I miss that she's a ginger?

how are you holding up?
Click to expand...
I guess I never mentioned but while she was in the hospital we started noticing her hair particularly in the back was red. It's crazy. Ill show you a pic with the scar which healed nicely but you can see her red hair clearer

 
shadyridr said:
I'm constantly stressed out and if you can see from the picture eating like a pig due to the stress. I have to get healthy again. 

I couldn't find a pic of the wound but here's one where you can see her red hair better

https://imageshack.com/i/pnCu7xXXj
Click to expand...
IMO, do whatever you need to do to get through these harder days while staying as strong for your family as you have. if it means eating- bon appetite! you can always pare back and/or work out when the dust has settled.

 
Good stuff Shady, three months already passed by...crazy.  Great work man, hang in there. 

 
Last edited by a moderator:
Riley was approved for all services (physical, occupational, speech). We go next Tuesday to discuss the plan (how often).

 
Regarding the spitting up, my daughter did this all the time. We would feed her a bottle, I'd hold her for 20  minutes or so, and then the explosion - like clockwork. The doctor recommended pre-digested formula and that worked wonders. She pretty much never spit up when we gave her that.

I'm not sure if that will help, but if you aren't using the pre-digested stuff, you may want to look into it. It's expensive but if I recall correctly, our insurance covered it.

Best to you and your family Shady. Hang in there. We are all pulling for you guys  :thumbup:

 
kutta said:
Regarding the spitting up, my daughter did this all the time. We would feed her a bottle, I'd hold her for 20  minutes or so, and then the explosion - like clockwork. The doctor recommended pre-digested formula and that worked wonders. She pretty much never spit up when we gave her that.

I'm not sure if that will help, but if you aren't using the pre-digested stuff, you may want to look into it. It's expensive but if I recall correctly, our insurance covered it.

Best to you and your family Shady. Hang in there. We are all pulling for you guys  :thumbup:
Click to expand...
We thought it was reflux but now I think it's some form of dysphagia (difficulty swallowing) due to weakness from the stroke. The weird thing was it happened for 2 weeks straight. Stopped for a week and I thought we were past it and then came back again for a week. Now it hasn't happened again a few days. It only happens while she is eating, never after.

 
Much easier said than done, but remember this is a marathon, it's not a sprint. Just like in the hospital, there are going to be setbacks. There will be steps backwards and then steps forward.  Again, think back to where she was just 2-3 short months ago and where she is now. 

So, it doesn't mean you don't sweat the small stuff, it just means to remember to sometimes step back and look at the big picture and enjoy, especially in the midst of a new obstacle. 

She's clearly a fighter and has a lot of people in her corner doing right by her. Trust in that and hopefully the small steps backwards won't take as big a toll on you.

Best of luck to you, to her, and to everyone else in your lives.

 
shadyridr said:
We thought it was reflux but now I think it's some form of dysphagia (difficulty swallowing) due to weakness from the stroke. The weird thing was it happened for 2 weeks straight. Stopped for a week and I thought we were past it and then came back again for a week. Now it hasn't happened again a few days. It only happens while she is eating, never after.
Click to expand...
Now I know this is different circumstances but my daughter did the same thing ALL the time.  We were a little worried.  90% of her baby pictures have a bib on. 

We found out we had to use these 2

http://www.enfamil.com/products/solutions-feeding-issues/enfamil-ar

http://www.enfamil.com/products/solutions-feeding-issues/enfamil-gentlease

Hopefully it's just a diet thing :)

GOOD LUCK SHADY AND RILEY

 
belljr said:
Now I know this is different circumstances but my daughter did the same thing ALL the time.  We were a little worried.  90% of her baby pictures have a bib on. 

We found out we had to use these 2

http://www.enfamil.com/products/solutions-feeding-issues/enfamil-ar

http://www.enfamil.com/products/solutions-feeding-issues/enfamil-gentlease

Hopefully it's just a diet thing :)

GOOD LUCK SHADY AND RILEY
Click to expand...
Thank you, at least we should get a definitive reason after the swallow study

 
shady it is so great to see you and your family out and about in those pictures and not at a hospital your journey is going to be different from most but the result is that you and your family all of them will be stronger than most and thats a fact be well and best wishes man 

 
You must log in or register to reply here.

Similar threads

scorchy
Any banking guys that can offer solutions to a vexing issue?
Replies
31
Views
561
Mrs. Rannous
Mrs. Rannous
odin33
Seeking medical and legal advice- Handling of daughter's outpatient surgery
Replies
15
Views
706
Terminalxylem
Terminalxylem
northern exposure
My Mom
Replies
17
Views
742
rzrback77
rzrback77

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top