Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Tuesday, April 6, 2010

Update and a day of tears

Hard day today!  I did get an update on Jeremiah today though no pictures and no travel date :(  The lady is back and a friend that got first decree just before us got travel dates today so I am prayerful we will get ours tomorow.  I was told that they have asked the person in Taiwan for our date but did not receive a reply yet.  I will share the update I did recieve that was very hard for me to read.  PLEASE keep Jeremiah in prayer.  I am bawling as I type this to you.  This is all update since January...


DATE REPORT RECEIVED
AGE
HEIGHT
WEIGHT
HEAD
CIRC.
FORMULA/
DAY
11/12/09
19 mo.

30.1 in
76.5 cm
19 lbs
8.8 kg
15.7 in
40 cm
1000cc
12/8/09
20 mo.
29.7 in
75.5 cm
21.1 lbs
9.6 kg
15.7 in
40 cm
1000cc
1/10/10
21 mo.
30.3 in
77 cm
20.7 lbs
9.4 kg
15.7 in
40 cm
1000cc
2/9/10
22 mo.
30.3 in
77 cm
20.3 lbs
9.3 kg
15.7 in
40 cm
35.5 ounces
1050cc
3/29/10
23 mo.
No measurement info


This confuses me because March 29th he turned 2 so would be 24 months.  Sad I have no weight and height for him for his bday.  But february shows a slight weight loss of 4 ounces so I worry that March may have as well.  and head circumference again has not grown and height was the same from January.

February 11, 2010: He had blood test for the drug content in the blood at the pediatric neurology clinic at NCKU.  The result is Valproic Acid: 44.52 which is slightly lower than usual. Doctor Huang suggested to dose to Depakine 200mg Bid 1cc and Baclofen 1 Ke Bid. The next follow up is scheduled  on May 13, 2010.
He was hospitalized from February 16 201 to February 20, 2010 because he had bronchial pneumonia.


This sent me to tears.  I had gotten word from a friend that picked up his son in Taiwan and saw Jeremiah that Jeremiah had been in the hospital and it so upset me that I did not know and was not with him.  To know it was Pneumonia and he was there for 4 days with no mommy just tears my heart out :(  I feel like we have so let him down in taking so long to fundraise thereby making it longer till we got to court :(  I fear he is getting worse. :(  each update sounds worse :( We also go this

* March 2010: His daily schedule is very irregular. (The doctor explained that it had to do with the unusual electron discharge in the brain). He would involuntarily laugh. When he hears familiar sound, he responds like he understand but he might not understand.  He can laugh with sound or have his mouth wide open.



I am not sure at all what that means about the schedule irregular because of electron discharge in brain.  I can't wait to take him MYSELF to the docs at Shriners and our Pediatrician and Neuro docs and find out more what they think and say.

I am so prayerful to get dates TOMOROW or sooner but as it is 5 am in Taiwan I doubt sooner will happen. Jeremiah needs to be home so bad.  PLEASE pray for him and for our final almost $4000 we still need to raise!

Another thing bringing tears today is Noah's IEP meeting with the local school.  He ages out of Early Steps and so the schools will come into the home for therapy.  Noah currently receives 1 hour of Speech, 1 hour of OT and 1 hour of special instruction every week.  The school is not going to give him as much.  He will get 30 minutes a week of speech (half what he gets now which I think he needs more not less ;(, OT will come twice each 9 weeks.  That is it, not every week, like twice every 9 weeks :(  special instruction will happen for an hour a week and adaptive pe will be 30 minutes once a week.  I dont know how OT will help sensory when they are not here and the lack of speech has me upset so I left the school in tears.  I am reseraching how to homeschool speech and seeing if I can find a place our insurance will cover OT in addtion to what he gets.  I committed to this little boy to do ALL I COULD to make sure he had the best shot in life.  I will FIND someone who can help with this sesory stuff!  Please keep Noah in prayer too.

And please pray for me, I can't stop crying as I type today and I just feel sooo overwhelmed, somewhat scared about finances and especially about how Jeremiah is doing, and now feel like I am in a way to get Noah what he needs.  If I had money I would take Noah and jump in the car and drive to a hotel and just veg with Noah.  I feel so I dont even know the word.

I KNOW God is able, I KNOW God knows the date we are going, I KNOW God will hold Jeremiah till we get there and I KNOW God knows how to get Noah's needs met.  I NEED to REMEMBER all that! I am soo happy I got word today on Jeremiah, even if it is not doing good, I still want to know how he is.  and I am very thankful the school will give us what they will.  I hate to sound like an ungrateful compainer :(  sorry guys.

Here are pics of my THREE KIDS!  Since I have no new picture of Jeremiah I will post the one from January again.


18 comments:

HollyAnne said...

Tami - there's a lot of stuff you can do for SI OT on your own. Talk to your current OT about setting up a sensory diet for him. Then you carry it out on your own. Do you do the Wilbarger brushing? That you can do on your own too. Look for the book the Out of Sync Child and the Out of Sync Child at Play. They are both very helpful for doing "therapy" for SI at home. You can do this. Speech I have no idea, but we did SI at home. SI kids tend to either seek out what they need too - so if there is something Noah is constantly doing that is driving you crazy (with my son it was crashing into the walls, me, furniture whatever. He needed that propriaceptive input) see if it is a sensory thing and find a way to meet that need in a way that doesn't drive you nuts.

Kat said...

I know the feeling of having to wait and that ache. I have come to the realization (in my humanness) that I need to be praising God for the wait too (crazy sounding ;) and have a hard time doing it sometimes) because it is His timing...it all is. I'm there with you and have days of tears, but know you're in our prayers....hugs!!!!

Invisible Hands said...

Tami,
Like the other commenter said, there is sooooo much you can do yourself. Think about what Noah has done in OT or speech therapy. Most things can be reproduced at home. I know right now it must ALL seem overwhelming.....the travel, the money, bringing in a new child with special needs, and moving our of the preschool program where you felt Noah was receiving good services.

There is a speech homeschool package for about $150. Additionally there are lots of books on all the therapies.

I know the specialist have lots of training and studying and experience under their belts. However, you are the mama. You instinctively know what he needs and how to provide it for him.

Accept the care they offer and then learn all you can so you can continue to work with Noah in between visits.

I'm sorry Jeremiah's news was not more positive. For what it's worth, we were strongly warned about our dd's head circumference. In her case, her head was huge and seemed to be getting bigger.

Turned out, very little effort was being put into getting an accurate measurement or the person doing it one month measured one place and the next month a different place on the head. When she got home, her head was large but within normal limits.

I hope you feel better. I am sure you have alot on your mind right now.

sherri

The Family K. said...

Tami,

Wow, tough day. I'm so sorry for all the things that are weighing on your heart right now. I will lift you up in prayer right now.

Sarah said...

From our experience with speech therapy, it was more about teaching US how to teach Hannah and less about the therapist actively working with her. I felt like the therapist showed us the way in... and then we did all of the work.

It is common for children to loose weight when they are sick. Hannah lost a pound and a half once when she had the stomach flu, and she always looses weight when she has an ear infection because she doesn't eat when she doesn't feel well.

I've seen SLC measurements that were way off, like where kids shrunk from one month to another.

Hannah is 26 months and weighs 21 pounds.

soontobemomof9 said...

I am so sorry Tami! You are right though, GOD HAS THIS!

You will be with him soon! Both of us will be holding our kids soon, not soon enough for us, but soon just the same!!!

It seems like as kids in orphanages get older, their growth gets more deficient... they need so much more ... and they aren't getting it. I was looking at Yanas chubby baby picture, and wonder where that chubby little girl has gone?....

Hang in there. You are NOT alone!

Amy L said...

Tami,
I am so sorry that you did not get some good news, but you're right... God is watching over Jeremiah for you, and he is in the BEST hands possible. This has been a long adoption process for you and I pray that very soon you will be on your way to bringing home your little man. The school issues are very stressful, even for me and I am a special education teacher. You know that you don't have to agree with his IEP and if you're not happy with it, than the best thing to do is get an advocate to go with you to his IEP. You can call a new IEP anytime, even if you just had one. I would recommend an advocate go with you, I had one come with me for a couple years when Jimmy was around 10 and she helped tremendously. Also, the school knows that this person KNOWS the laws and they can't pull the wool over her eyes. Keep us updated! I don't think you are a whiner at all. You are so encouraging to all the moms that are adopting and always one of the first to congratulate someone when they receive good news. Please know that there are many many people out here praying for you and your family!!:)
Amy

schoolmother said...

Yes Tami, you are on my heart. I'm sorry your little guy was in the hospital without his mommy. Thanks for letting us know how you feel so we can pray better. God is with you.
Joy

Jill said...

I am praying so hard for you and your precious family, Tami! May God shine down upon Jeremiah and may HE send HIS angels to watch over him and protect him. I am sorry that you got confusing and sorrowful news and that you want to be with him more than anything. Please keep the faith and know that God will provide and bring Jeremiah home as soon as possible.
God Bless You in your time of need!

Jill

Denise said...

Tami,
Big hugs..Iknow what you are going through.Jeremiah will blossom once he is home.I know the wait is so hard.Our son age 5 came home weighing 16 lbs .I fretted as he is so tiny but now am watching him Blossom so much.Jeremiah will do the same.Hang in there girl your wait is coming to an end.I know the ache you have with the unknowns not being there to care for him yourself.God is watching over your angel and keeping him safe for the day his moomy comes and gets him.

Sandra & Steve said...

I am so sorry you are going through so much now. When things get hard for me I remind myself that this is one season, one period of time, it will pass. It must be overwhelming to be dealing with the waiting, worrying, long distance love, immediate concerns...sometimes you need to fall apart,cry a bit, so you can come back stronger for your babies. I do hope you find some peace and that things begin to turn your way soon. Take care.

Lisa said...

***hugs***

Please know you are not alone on this journey ~ it may feel isolating at times, but so many of us are covering you in our thoughts, wishes and prayers.

Measurements, especially head circ. are notoriously difficult to get and children often lose weight when ill.

My Mama's heart grieves for you all tonight as I know what a difficult time this has been of late.....

Annie said...

Tami, sorry, I hadn't stopped by in a couple days. So sorry you have all of the aching for you little guy waiting for you and I know there is absolutely nothing that will relieve it until he is in your loving arms. My heart hurt just thinking of Jeremiah in the hospital without you! He will be home soon. I do agree with others here, I imagine with a little research, I bet you can find out many methods to supplement Noah's therapy. I prayed for you and the kids in the car this morning on the way to work. I'll keep it up!

Terry said...

Tami I am so sorry that you didn't receive the news you were hoping for. I will be keeping you in my thoughts and prayers!

When Emily came home she had several delays and just as many teachers. Everyone is right, there are many things you can do for Noah! The teachers teach us too and we help our children learn. She aged out of Early Intervention and the PT & OT were great at showing us what we could do. It was based on play, so it was fun. Ask them, I'm sure they will help!

Be strong - you will be holding Jeremiah soon! {{HUGS}}

lorabelle said...

Just want you to know that you're in my thoughts. I'm happy to see that other visitors have commented about some of the same things we spoke about a couple of days ago on the phone. You can truly do so much, you'll be surprised!
SLC measurements and weights have been known to be off, so please don't worry. He'll be home soon!
Thinkin of ya Tam!
Hang in there!

Shannon said...

Hi! I just commented on the post below this one (oops)! We walked a bit of a similar journey when we adopted our Georgia Mei in August. We kept getting updates that she was getting sicker and sicker. I am praying for you and want you to know that God's timing was perfect for Georgia. At the last minute we were able to join a travel group late (the next one didn't leave for another 30 days) to go and get her. The day we landed back in Seattle she was admitted to the hospital to stablize her for open heart surgery. The surgeons told us, get this...that she would not have bee alive "30 days later." Praying for God's peace that passes all understanding for you and for His perfect timing!!!!!
Hugs & Prayers,
Shannon
www.throwingourarmsopenwide.blogspot.com

Robin said...

Oh Tami-
What a tough, tough day you have had. It is so hard to think of your baby far from home and in the hospital. My heart aches for you. My oldest son needed ot and st as well. I am so sorry that he school is not offering more. Keep asking for it though. One way of getting more services is having them give tests that they can give again in 6mo or 1 years time. The tests give you concrete proof if your services are working and the schools cannot argue with the numbers. Also- I am a speech therapist. My primary focus is adults but I would be happy to try and brainstorm ideas for Noah. Just send me an email. I hope that you are feeling better and that you get good news soon.

Kelli said...

I am so sorry. That has to be hard news to get. It is so difficult not being with our children, especially when they are sick half way around the world.
You are in my thoughts and prayers.

As for OT and speech, it is unfortunately so common for the schools to offer less. Our school districs have THREE OTs to share among 20 schools. Horrible. Push for the OT to set up a sensory diet and teach you everything. You can do so much on your own.

THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
AND NOW THE WAIT FOR JEREMIAH IS OVER TOO!!!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year


Kisses in the Wind

KISSES IN THE WIND
I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.


May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.


When Love Takes You In!