|
Post by Woobster on Oct 4, 2015 21:52:08 GMT
Thoughts are still with Phoebe and the rest of your family. I can only imagine how difficult this is for you... Please remember to take care of yourself.
Big hugs.
|
|
Deleted
Posts: 0
May 17, 2024 5:17:49 GMT
|
Post by Deleted on Oct 4, 2015 22:35:48 GMT
Update 10/4 Lots of ups and downs. It seems like when we get a handle on one thing another problem pops up. There are ferritin levels that had come down from 2200 to just over 200 and now they are back to almost 2000n a matter of four days. I feel like we take one step forward and two back. They are also concerned because of the amount of urine she is producing and how much sodium is there so now we have the endocrinology team as well. It seems nothing will ever be straight forward with this and it is exhausting. I think her levels increasing again so rapidly has just left me so drained and depressed. Ugh this is awful. Thank you for letting me vent. It is just so hard feeling so helpless when you see your baby so critically I'll. We are here for you. There are a lot of shoulders that are hear for you. Prayers for Phoebe that this is a minor set back and she gets back on track quickly. Prayers for you mama, for your strength. Prayers for the Dr's to get it right so Phoebe can go about playing and having fun again.
|
|
|
Post by shescrafty on Oct 4, 2015 22:49:14 GMT
Thank you so much for your support and kind words. My husband comes daily and typically spends the night Saturday. We have another child who is 14. My MIL flew up from SC to be with him and that has been a godsend.
My friends have been amazing-there is a food trim set up and at the front desk they commented on how many visitors Phoebe has. We are blessed in that respect-I would go even nuttier without my friends for support on a daily basis! My mom lives about 30 minutes from the hospital and comes often as well. Compared to many other families here we are lucky in that aspect-she is never alone for more than a few minutes if I have to get something from the nutrition room or something like that, and my husband's job has been so flexible. I took a leave of absence with FMLA from a teaching position I started this year after being a SAHM for 10 years. It was from the school where Phoebe attended so they have been extremely supportive as well.
Thank you for listening and helping raise my spirits. This is a bumpy road and the journey is not smooth, but I know that Phoebe knows I love and adore her and will always be here for her.
|
|
valleyview
Pearl Clutcher
Posts: 2,816
Jun 27, 2014 18:41:26 GMT
|
Post by valleyview on Oct 4, 2015 22:58:19 GMT
I'm so glad to hear that you have family close by and that your jobs are being understanding. We will still be happy to allow your venting and send PPT Phoebe's way (and yours).
|
|
|
Post by kiwigirl on Oct 4, 2015 23:02:38 GMT
I keep thinking of your family and Phoebe often. I am sending positive thoughts & vibes your way. I can't believe what you're going through, it must be so awfully tough on you and as Christine58 said on the previous page, is there anything we can do for you or Phoebe? xXx
|
|
|
Post by peasapie on Oct 4, 2015 23:17:35 GMT
Thinking of you with positive thoughts and prayers.
|
|
|
Post by shescrafty on Oct 4, 2015 23:31:47 GMT
I keep thinking of your family and Phoebe often. I am sending positive thoughts & vibes your way. I can't believe what you're going through, it must be so awfully tough on you and as Christine58 said on the previous page, is there anything we can do for you or Phoebe? xXx You all are very sweet. At this point she is talking and watch tv and will agree to go to the Art room they have here but only stays for a limited time. She does not have the attention span she used to and her entire focus is on food and eating. At summer's end she had a 6pack of muscles on her tummy and right now she has what looks like a food baby in her tummy. The only thing that gives her some pleasure is food. These steroids are crazy! So many people have sent her lovely gifts and activities to do and she has no interest in doing any. Sometimes she will color with me or do clay but it is all short lived until she tells me she is hungry again. But thank you tonal who offered. Our room is filled with cards and treats but really right now she can't enjoy any of it. I have a kindle and an iPad here and that has been what I have used to occupy my downtime.
|
|
|
Post by blarneygirl on Oct 4, 2015 23:38:28 GMT
Thank you for posting an update! I'm keeping Phoebe and her family in my prayers. I hope the roller coaster stops for her soon and you only see improvement!
|
|
|
Post by mikklynn on Oct 5, 2015 0:10:59 GMT
I cannot imagine how stressed and exhausted you are. I wish I could come give you a hug, bring you lunch, sit with Phoebe while you nap...I hope you have someone you can ask for these things.
What I can do is send cyber hugs and let you know that you and Phoebe are in my prayers every day.
Thanks for updating today.
|
|
christinec68
Drama Llama
Posts: 5,129
Location: New York, NY
Jun 26, 2014 18:02:19 GMT
|
Post by christinec68 on Oct 5, 2015 0:16:22 GMT
I am so sorry for all you and your family are going through, especially sweet little Phoebe. I will keep you all in my prayers. ((hugs))
|
|
akathy
What's For Dinner?
Still peaing from Podunk!
Posts: 4,546
Location: North Dakota
Jun 25, 2014 22:56:55 GMT
|
Post by akathy on Oct 5, 2015 0:31:45 GMT
Aw, poor kid You'll all be in my prayers. Hugs!
|
|
|
Post by DinCA on Oct 5, 2015 0:32:17 GMT
Thank you for the update. i can't begin to imagine what you're going through but I hope you know you can share it all here. You sound so tired. I wish I could give you a break but I also know that it's really hard to rest when your baby is ill. I'll be praying for strength! Hugs!
|
|
tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
|
Post by tincin on Oct 5, 2015 8:02:49 GMT
I am so sorry that Phoebe is having such a difficult time. I think of her and your family often. Thank you so much for taking time out of your hectic schedule to update us.
|
|
wellway
Prolific Pea
Posts: 8,768
Jun 25, 2014 20:50:09 GMT
|
Post by wellway on Oct 5, 2015 9:04:42 GMT
This is a very hard path you are travelling, it is good you have medical experts and supportive family and friends to hold your hands through it all. Your entire family are in my thoughts.
I hope you have time built in to your week to somehow get some sleep and recharge.
|
|
|
Post by LavenderLayoutLady on Oct 5, 2015 9:29:40 GMT
(((hugs)))) shescraftyI am so sorry Phoebe is having downs along with her ups, and isn't quite out of the woods yet. From one mama to another, my thoughts are with you.
|
|
|
Post by ScrapsontheRocks on Oct 5, 2015 9:46:16 GMT
Something new to focus good thoughts on: may Phoebe's endocrinology team get a handle on things very soon and contribute to her gaining strength.
|
|
|
Post by miominmio on Oct 5, 2015 10:18:11 GMT
(((Hugs)))
|
|
|
Post by jinxmom2003 on Oct 5, 2015 13:56:01 GMT
Sorry that your family is having such a difficult time. Continued prayers that the healing will be total very soon.
|
|
Jili
Pearl Clutcher
SLPea
Posts: 4,363
Jun 26, 2014 1:26:48 GMT
|
Post by Jili on Oct 5, 2015 14:05:14 GMT
Phoebe is never far from my thoughts. Thinking of you often.
|
|
|
Post by lbp on Oct 5, 2015 14:14:13 GMT
I am so sorry you and your family are going through this scary time. Continuing prayers for you and Phoebe.
|
|
calgal08
Pearl Clutcher
Posts: 2,519
Jun 27, 2014 15:43:46 GMT
|
Post by calgal08 on Oct 5, 2015 14:26:21 GMT
We can hear the physical and emotional stress in your post. Seeing someone you love with all your heart and soul going through so much illness is the hardest thing you can do.
You are in my thoughts.
|
|
|
Post by shescrafty on Oct 5, 2015 16:15:31 GMT
If you can, please say a Quick prayer that her MRI shows a decrease in swelling in her brain from last week. She is in the MRI now and I am waiting.
|
|
|
Post by Sassy Sabrina SWZ on Oct 5, 2015 16:18:24 GMT
Praying, with an arm around your shoulder.
|
|
Deleted
Posts: 0
May 17, 2024 5:17:49 GMT
|
Post by Deleted on Oct 5, 2015 17:28:50 GMT
If you can, please say a Quick prayer that her MRI shows a decrease in swelling in her brain from last week. She is in the MRI now and I am waiting. Praying that the swelling in Phoebes brain is decreased and she will be feeling better soon. Hugs to you mama.
|
|
valleyview
Pearl Clutcher
Posts: 2,816
Jun 27, 2014 18:41:26 GMT
|
Post by valleyview on Oct 5, 2015 18:05:06 GMT
You're not alone in your wait. PPT and hugs.
|
|
|
Post by cadoodlebug on Oct 5, 2015 19:58:53 GMT
I'm glad you have the Peas to *talk* to. Gentle hugs for you and continued prayers for Phoebe.
|
|
eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
|
Post by eastcoastpea on Oct 5, 2015 22:59:18 GMT
More prayers and hugs being sent. Hang in there.
|
|
|
Post by shescrafty on Oct 5, 2015 23:18:52 GMT
MRI was better than last week-no details because the radiologist report is not done but no new lesions or bleeding and swelling is down somewhat but still not where it should be. Parts of her brain are dead but we don't know fully what that will mean to her education or personality and if other areas of the brain can start working to compensate.
Thank you for caring and be I g sweet-when I am feeling stressed I come to the thread and get a boost of support.
|
|
scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,763
Jun 25, 2014 23:21:30 GMT
|
Post by scrapngranny on Oct 5, 2015 23:24:06 GMT
Prayers for more continued healing and strength for your family.
|
|
|
Post by grammy2emmasophia on Oct 5, 2015 23:28:19 GMT
Phoebe, you and your family are in my thoughts.
Kathy
|
|