Need tefillos- Please daven for my family

little neshamala ↓

Thu, Jul 11 2024, 11:59 am

amother OP wrote:

Thrilled to hear positive news. Thank you for updating.
Hang in there!
I'll keep davening

amother

Salmon

Thu, Jul 11 2024, 12:32 pm

[quote="amother OP"]Positive update! Boruch Hashem -
Boruch Hashem! A new medication was unexpectedly very effective in alleviating my child’s current medical crisis. We are HOME (for now) and my child is much more comfortable. Boruch Hashem! Still need many tefillos - situation is more serious than originally thought- but right now we have a lot to be grateful for. The present reprieve is simply a gift and hug from Shamayim.

My other child who was facing a huge crisis- Boruch Hashem half was resolved in the blink of an eye! The other half is still looming though. Still need tefillos, but Hashem showed us how quickly He can fix things!

[/quote

Rav Gamliel Rabinowitz Shlita told us that Hashem is a borei refuos. He is constantly creating new refuos. Even if five minutes ago there was no refuah, right now there can be one.
You saw it with your own eyes. And in announcing it, you are mekadesh shem Shomayim.
May Hashem bentsch you (and all of us who await them) with complete yeshuos and refuos.
I hope you will come back here to be Mevaser more good news soon.
Refuah shelaima.

amother

Valerian

Mon, Jul 15 2024, 7:39 am

amother OP wrote:

Positive update! Boruch Hashem -
Boruch Hashem! A new medication was unexpectedly very effective in alleviating my child’s current medical crisis. We are HOME (for now) and my child is much more comfortable. Boruch Hashem! Still need many tefillos - situation is more serious than originally thought- but right now we have a lot to be grateful for. The present reprieve is simply a gift and hug from Shamayim.

My other child who was facing a huge crisis- Boruch Hashem half was resolved in the blink of an eye! The other half is still looming though. Still need tefillos, but Hashem showed us how quickly He can fix things!

Financially it’s still very difficult. Some family members were kind, generous, and thoughtful and really stretched themselves to buy my kids necessary summer things while they shopped with their own kids. I got home from the hospital expecting to have to somehow find the time, energy, and money to make sure my other kids were cared for and found out that it was mostly taken care of. I am so grateful!

Thank you so much to everyone who has been davening, and please, please continue davening!

OP I feel for you very deeply. I had a child who had a very complicated diagnosis, it took 2 years and many different doctors and specialists to figure it out.

When we finally found a hospital that could treat all his multiple issues under one roof, it was a huge relief. Someone on top was in charge of his care and coordinated with all the departments he needed.

It was still very difficult, especially since it was an unusual condition(s) so no-one could guarantee a positive outcome, plus the hospital was 3 hours away from my home.

I'm thinking of you and davening.

If you'd like to be in touch, I can give my SN.

Signed: A Mom who has been in this traumatic situation Heart

amother

↑ OP ↓

Mon, Jul 15 2024, 4:23 pm

Thank you, everyone, for your beautiful brochos and all your tefillos. I'm shocked once again by how much chizzuk this gives me.

Boruch Hashem some basic supportive care is helping my child feel better and the situation is not life-threatening now - boruch Hashem! - but it is really not good.

We have some options medically, but none are great. My husband and I need to make some impossible choices. Right now, to add to everything else, we disagree about what our next step should be. We're on the same page of course in that we both only want the best for our child and family, but we each feel strongly that a different choice is better. The doctors are leaving it up to us, and our Rav and the medical advisors all say they can't weigh in on which is the better choice. Neither is good. The final decision will probably be mine, which is terrifying.

Usually, when we disagree about something, either we discuss it until we reach some sort of agreement, we get hadracha from our Rav or other advisor, or one of us gives in since it's just not that important. Now we're not any closer to agreeing, no one feels able to give us hadracha, and this IS that important.

I told my husband I was posting about this - he also thanks all of you for your tefillos, brochos, and especially for the chizzuk you give me.

Please keep davening for us.

amother

↑ Brunette ↓

Tue, Jul 16 2024, 11:14 am

amother OP wrote:

OP although we can’t help with your most difficult decision, I’m wishing you lots of strength and Bracha that whatever decision you make will be the right one for your child and will not affect your shalom bayis or yourself and you should have no regrets.

Sending lots of love and tefillos, we’re here for you.

amother

↑ OP ↓

Sun, Jul 21 2024, 9:26 am

And the roller coaster ride continues!

After more consults with our doctors they came up with a plan to minimize risks with the option I was leaning towards. The chance of it helping at all (though not necessarily a lot) was about 50%. BH, with the minimized risk, my husband agreed to it also. By Thursday it was clear that it was helping! My child was definitely doing better Boruch Hashem, more dramatically than we thought possible! Then on Friday we started seeing side effects, one of which is especially concerning. The doctors still want to wait another week and a half before changing anything. We’ll see…

Meanwhile the doctors found a minor infection yesterday that probably had a role in driving this crisis. IyH it should be straightforward to treat and hopefully this will help a lot.

This new treatment option is a protocol from a new doctor at a different medical center.
We’re once again dealing with a transfer (driving distance but several hours) and more insurance battles.

We have so much to be grateful for bH and so much to daven for.

Thank you all for your support and tefillos.

amother

↑ Brunette

Mon, Jul 22 2024, 1:35 pm

amother OP wrote:

Wow OP that is definitely a roller coaster ride. Really hoping for you that the treatment that was showing signs of helping continues to surprise you in a good way and the concerning side effects disappear.

May the transfer go smoothly and easily.

amother

↑ OP

Tue, Oct 01 2024, 9:48 am

Now that it’s before Yom Tov again I keep thinking back to the support given to me on this thread when I was frantically trying to make Pesach.

We’re still riding our roller coaster. We were home for over a month bH- including the beginning of the school year which was so important to my other kids! Last week we were headed for another admission though and Chasdei Hashem a doctor was able to order a new medication that could be administered at home. It seems to be helping with mostly tolerable side effects. Please daven that the next admission can be pushed off until after Succos. It would need to be in a hospital several hours away which will be hard regardless, and very very rough over Yom Tov.

The issues looming over my other child are mostly resolved, thank you Hashem, and my other kids are bah doing pretty well now - but I can’t stand the thought of what will be if we have to leave them now.

Insurance has been very VERY difficult but it looks like some progress has been made this week bh! May it actually pan out!

I just put up a challah dough l’kovod Rosh Hashana (a luxury I do not take for granted!) and I have so much to daven for.

Looking back over the year there were times that were horrible, when we didn’t know if our child would survive the night, times when her pain was unbearable, times when our other kids were suffering terribly, times when there was NO WAY we could manage physically, financially… and also so many unexpected yeshuos, better than we knew to ask for. Yad Hashem has been so clear so many times.

Thank you to everyone who has been supportive and been davening for us.
Please please keep us in your tefillos, and may Hashem bentch you with kol tuv.

May we all be gebentched with a wonderful sweet new year.