Truly, I can't even remember what day it is right now .... gosh this week has been a whirlwind!
Hannah is back in her room. Procedure was done here at NIH & went fine. We will start to know some stuff tonight & in the next few days regarding the results of what is in her lungs.
Someone left a comment on the blog with a link to this article ... read this. It is my inspiration for the day: http://www.cantonrep.com/homepage/x1543607913/HOF-queen-learned-much-about-life-from-rare-illness
Isn't this young woman a picture of what Hannah will look like one day when she is 20? Please, Lord!
Kim & Lily are on the first leg of their trip back to California. It was SOOOO hard to say goodbye but the right thing to do.
Thank you everyone for prayers & love ... and Rachel for posting on the blog. You're the best!
Just pray that Hannah will turn around & be back to her "IV pole dancing" before too long :-)
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When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze, For I am the LORD, your God, the Holy One of Israel, your Savior. Isa. 43:2-3
Friday, July 31, 2009
What Day is It?
Quick Update
Aunt Rachel reporting...
Debbie's unaware I'm posting something. I remembered her password somehow -call it divine intervention. I'm desperate to have our family and friends get on their knees today and beg the Lord to heal our sweet Hannah.
When I left her last night, she was not herself at all. It's heartbreaking to see the change in her so rapidly. She was just at my house playing the Wii asking, "Umm, Aunt Rachel, can I please have some graham crackers?"
2pm today - NIH has arranged to have a pediatric doctor come and perform the procedure (can't remember what it's called) on Hannah's left lung. Join me in praying they can narrow down exactly what's causing the recent issues and get the specific medication to treat it.
Aunt Kim and Lily will head to California later today. Pray for safe travels and that Lily's heart will continue to be bonded with her mom, dad and "anna" as she calls her sis.
I'm at a loss as how to ask you to pray....
pray that Hannah won't have pain today
pray that God will restore her weakened body
pray for Debbie as she is running on fumes
pray for the doctors to have insight and inspiration in how to properly care for her
STOP WHATEVER YOU'RE DOING and Pray, pray, pray, pray, pray.
With a heavy heart,
Rachel
Thursday, July 30, 2009
Plans
Here at the NIH they do not have a Pediatric Pulmonologist doc to do the test that she needs done. Right now the NIH is coordinating to either have Hannah go to Children's Hospital DC for the procedure or to have their specialist come here to do her procedure. We are hopeful it will all happen tomorrow so we can figure out exactly what is going on in her lungs.
Hannah just looks terrible. It is shocking. Truly. She feels downright awful & has about zero expression on her face. She hasn't had anything to eat for over 2 days & has still been throwing up. Today has been a day of holding the hair back & holding the bucket. It is just terrible to see your little girl like this!!!!!! There really are no words & we have been through a lot in 8 months ... this time just seems worse to me.
Jim will be here in a few hours. Lily is going back to California tomorrow with Kim. Although I want her here with me .... she needs to be with Auntie Kim & family until we are through this part of the storm.
Thursday - Grand Rounds
So Hannah woke up without a fever & as much as that would be good news, it isn't really. The doctors all came in today (about 8 of them) and discussed the entire situation. They are going to take Hannah to the OR for a procedure (bronchiscopy, i think it is called?). They want to get a sample of the infected tissue in her lungs to make sure they are treating her with the proper anti-biotics. Hannah is still feeling miserable despite not having a fever - right now she is in bed with my mom (love you, Grandma!!).
Hannah looks better than last night but overall looks a lot worse than just a week ago. She is having more C-Diff issues than when we first came in (abdominal pain, etc) so there is obviously a lot going on in her precious body. Hannah has zero appetite ... even Aunt Di-Di's fudge isn't tempting her. I know she is really sick if that doesn't make her get out of bed & dance -- poor baby!!
I can't think too much about the road in front of us & what might be going on. I just have to focus on what we are doing right now. Right now -- cherry zero, grill cheese, try to take a nap & take Hannah to OR for her procedure. I can't let my mind run down the road that it wants to run down of "what if this? what if that? what will happen ???? .......... " Just too much.
I know God is protecting me that I am even able to talk with the doctors with clarity of mind. It is totally His provision in every way.
Wednesday, July 29, 2009
CT Scan
Double Pneumonia. Ug.
Fevers been around 104 - 106 all day. She hasn't been able to take Tylenol, so that is not helping things.
Aunt Kim just got here ... Lil & the rest of my family are on the way from Philadelphia. Jim arrives tomorrow night.
Hannah had a reaction to one of the antibiotics that got started so she got switched to something else. Right now she is very puffy, swollen & has a rash (thankfully, not itchy!) from the original anti-biotic.
Thank you for lifting up Miss Hannah in prayer!! She is really miserable but hopefully these new anti-biotics will kick in quick & things will turn around.
Oh my .... the roller coaster of aplastic anemia. They should really name a ride at Six Flags after this crazy disease.
Update
Real quick b/c today is another not so good day .... Hannah is still cranking up the high fever. Right now she is past 105. She is going to get platelets & blood today (both are needed). Her heart rate is high (156) and she is very uncomfortable. She is going to have a CT Scan of her chest to see if she has pneumonia again. We have to figure out what is causing her high fever.
She isn't able to take the tylenol b/c her tummy is too upset ... right now she has a cooling blanket on her in hopes that it will bring down her temperature.
Just wanted to update ... I know a lot of people are praying & I am very grateful. Aunt Kim gets here this evening & Jim just changed his flight so that he gets here tomorrow (he was supposed to come next week). My mom & Rachel will drive down from Philly as soon as they are able tonight (with Lil!).
I am just in shock how fast Hannah can go from doing Wii Fit (less than 2 days ago) to being this sick. Hannah is such a sweetie pie & being such a trouper through all of this.
Tuesday, July 28, 2009
High Fever Still
Hannah has been running high fevers all day -- despite Tylenol. Right now she is up past 105. Hoping not to break any records tonight. She looks miserable & feels worse.
We are camped out in our hospital room doing either sleeping or watching TLC or Discovery Health. I am not sure if it is just C-Diff related fever or if something else is going on. She has been coughing a bit here & there so I am going to ask for them to really check her chest in the morning.
We have had great nurses today & tonight so much to be thankful for with that!!!
We are going to get through this....just an unexpected (or maybe should be expected at this point!) rough patch this week.
Thank you for praying for Hannah ... and yes, please feel free to add her name to any prayer list, etc.
All God's best from NIH, room #2672, building #10
Debbie
Terrible Day for Hannah
Hannah has had a fever all day & is feeling just downright miserable. I won't go into everything but she is just so not herself right now that for the first time in a long time, I am scared.
I have seen this before with her & high fevers ..... just hoping it all turns around as quick as it started.
Please just pray for sweet Hannah to start feeling better & for her fever to go down completely.
Aunt Kim is coming out tomorrow from California .... oh my goodness, how I miss my BFF ... get out here now!!!!
Good Morning, Baltimore!
And I thought we were staying in Philadelphia for the week. Who was I kidding?
Myself, of course :-)
Surprise, surprise -- we are back in the hospital at NIH.
Hannah started to have a fever (never a good thing with Aplastic Anemia), abdominal pain & C-Diff issues. Poor thing!! We were just starting to get settled at Grandma's & Grandpa's place. Mainly we are in the hospital because starting last Friday Hannah wasn't able to take the anti-biotic pills anymore (making her gag & feeling sick to her tummy). She stopped taking the pills and since then her symptoms came back. Now she is on IV anti-biotic to knock out this crazy C-Diff.
Hannah was very upset about coming back to the hospital ... after a long hard cry she came upstairs & told me, "Ok -- if we go tonight that will be fine with me." It was like she just needed to get it all out that this is just too much (i can't blame her for one second!!!). Her whole attitude was totally changed ... she seemed to have just re-adjusted her mind to the "new" plan for our week. Plus, she got to spend some time with her cousins before we left for the hospital .... fun with cousins is ALWAYS a good thing ... thanks, Sarah & Dave!!
We had a great 2 days alone together with Lily (my parents were out of town). Lily is now camped out with Aunt Rachel & family. What would I be doing without my awesome family through all of this?? I can't imagine.
The girls & I stayed in all day on Sunday (a wonderful treat together!!!!) and then we went out for dinner. Lily is just sooo stinking funny. She does funny things on purpose to make you laugh and then when she gets a laugh out of you she does it over & over. This morning in the rocking chair she had me laughing so hard I was almost crying. That girl has some serious personality!!
She is just the tiniest little thing but she has the will (and vocal cords) of a giant. She is so clear on what she wants & she will let you know. Truly an Eriksen Girl -- knows what she wants & how to tell you. I love it!! I am just in awe of how beautiful she is and what a sweetie pie she is.
Hannah & Lily are SO BONDED. It is such a God-thing. Just incredible since they have had so much separation over these past 8 months. Hannah loves Lily & Lily just loves her right back just the same. These sisters were made for each other. Their relationship is such an answer to prayer. While we were waiting for our referral I prayed that they would be connected in a very special way. God has done more than I could have ever thought or imagined with these two. Not only did He answer my prayer for them to be bonded but He has done so in the midst of the worst circumstances for them to have an opportunity to bond. Thank you, Lord!
I am grateful for the reminder that God has answered many, many of my prayers. Too many for me to count. His answers have not always been in my timing (hello? ... waiting almost 3 years for Lily!!!) but He does hear & He does answer!! If I had not waited for His timing with Lily, we wouldn't have HER!!! Now I am waiting for Him to answer the cry of my heart for Hannah's healing.
Saturday, July 25, 2009
PM or AM?
I woke up & the clock said 7:18. At first I thought "how unusual for me to wake up so early". Well, it wasn't 7:18AM ... it was 7:18PM!!!!!!!!! I slept for 16 hours straight.
So much for a day of pampering :-) I guess I just needed an entire day of sleep.
The girls have had a great day over at Aunt Rachel's place & I am about to go pick them up. It will be nice to just be camped out at my parent's place.
Thank you, Lord, for the time we can have together ... me & my girls!!! :-)
Friday, July 24, 2009
Next Appointment is One Week From Today!!
Hannah & I went to the clinic today for her appointment. Her blood counts were just above what is generally needed for transfusions (platelets 15 & hemoglobin 7.2). Her doctor is so awesome & agreed to go ahead & transfuse her today so that we don't have to come back until next Friday (otherwise we'd have to come on Tuesday). I am so happy because now we can go to Philadelphia for almost an entire week! My sister, Rachel, and her daughter, Sarah, were here watching Lily all day while I was at the clinic with Hannah. They all just left to drive up to the Philly-area.
As for me? I am A .. L... O... N ...E ..... !!! :-) I am off to get some much needed sleep at my parent's place & maybe even find a hair stylist that has an opening on the books for tomorrow!
Please just pray that we can just stay in Pennsylvania this week & we won't have to come back down to Maryland before Thursday night. I am so happy at the thought of being at my parent's place for the week. A break like this is much needed .... for all of us!!! :-)
Thank you to Amy from Indiana for your comment on the blog (and so many others for beautiful comments & emails). I totally agree with you:
The will of God will never take you where the grace of God will not sustain you.
Truly, I have never felt God's grace in my life like I have these past 8 months of Hannah's illness. Praise God for His grace that is amazing & never ending!!! I cannot imagine walking this road without the knowledge that He loves Hannah far more than I could ever love her & that He wants what is absolutely best for each of us, His children.
All God's best,
Thursday, July 23, 2009
Update from Maryland
Hannah seems to be doing a lot better & the C-Diff seems to really be clearing up. We had a bit of a scare about 24 hours ago where I packed up the car to go back to the hospital (yes, pack, unpack, pack, unpack, pack, unpack ... the story of my life). Once she slept for the night at the hotel she seemed a lot better today & has been able to take her meds all day.
Blair is leaving early in the morning. We are sad to see her go but we SO APPRECIATE her being here these past 2 weeks. It has been so great to have her helping with everything & keeping the girls entertained & laughing. Thanks, Blair -- you rock & we all love you!!!
Lily is just hilarious! I really need to get her on video for the blog ... she is up to some seriously funny stuff!!! Also, she is talking up a storm & trying to say everything. Tonight we went looking for a Walmart (which we never found for some reason!?). As we were driving, I was saying, "Walmart where are you?" She starts saying "Wal-MAR ... Wal-MAR ... Wal-MAR .." It is just so cute to hear her trying to say everything!
I am very ready to be home at this point. We have been gone from home since June 11th but it is hard because Hannah is in such good hands here at NIH. I know the Lord will give me peace when it is time to go -- so for now we are just camping out a bit more. I'd love to see Hannah's numbers start to improve before we go home. But, who knows? Her numbers may not improve & then we will be off to a hospital for a much longer stay with either chemotherapy and/or bone marrow transplant (at some point this Fall). I'd hate to be out here in Maryland if she wouldn't be hospitalized back at home & we are missing this time when we could all just be at home together. I don't know!?! In this situation, there really just isn't a "right thing" or "wrong thing" to be do. All I can do is keep Hannah as the top priority. Once we are on the other side of Hannah's illness, everything in my life that has been on the back burner (and that is just about EVERYthing) can get some of my focus & attention .....
That is, of course, after I take a vacation alone to a hotel with a super comfy bed, a pool, lots of magazines to read & Sudoku books to play!!!!!!! I need to give me, myself & I some attention. My roots are gray, my skin is dry & my nails are neglected. I am a mess, mess, mess -- but my daughters are well loved & really, what more could I hope for at this point in the midst of all we are going through?! Manicures & hair appointments just don't rank high on the list of things to do :-)!
All God's best --
Sunday, July 19, 2009
C-Diff Positive
Hannah's test came back positive for C-Diff so on Saturday she just started on a 10 day oral anti-biotic. The oral medication does not come in a liquid form so the doctor told us we'd have to be admitted the hospital since Hannah refuses to take pills. Well, Hannah surprised us all & said she'd take the pills. WOW! She is now taking the pills one at a time on a spoon with Hershey's Chocolate syrup. She has done so great & is SOO PROUD of herself for getting the pills down! We will be living at the hotel in Bethesda until the C-Diff is cleared up enough to go back to the Children's Inn (which is like a Ronald McDonald House).
Hannah is so happy that Lily is here .... as you can imagine! For a while there Hannah was doing a lot of baby talk (coping mechanism, I guess??). Ever since Lily got here, I have not heard any baby talk from Hannah. I guess she is leaving that responsibility to Lily & fulfilling her role as big-sister :-)!
Right now Hannah is asleep in the clinic here in the hospital. I just got her counts back & she doesn't need any transfusions today. Her platelets are at 33k & her hemoglobin is 8.2. We are good until we have to come back to the clinic on Friday & most likely then she will get transfusions. The nurse (Debbie) that takes care of Hannah in the clinic is just amazing. Hannah has allowed Debbie to access her port 4 times in the last 8 days & not once has Hannah cried or screamed. It has been so incredible -- truly an answer to prayer. Thank you, Lord!!!
My computer is still down & the hotel doesn't really have a working computer. Well, they say they do ... but they don't :-). Right now I am on a computer at the hospital but I don't get here too often ... especially not alone. Ha, ha, ha!
This will be a good week -- Blair is here until Thursday, then my sister, Rachel, comes down to watch Lily while I take Hannah to clinic on Friday. After that, I am hoping to go to Philadelphia for the weekend & just enjoy some time alone at my parent's place with my girls (they will be out of town).
And last but truly NOT LEAST -- my "little" sister, Miriam, gave birth last night to baby #3. Welcome to the world Baby Justin!!!!!!!!!!!!!!!!!!! Justin, we are all so happy you are here ... our family needed the joy of your birth in more ways than you will ever want to know!!! Congrats Miriam & Mark and big brother, Josh & big sister, Julia!!! Much love to you all in Indiana!!!!
All God's best from the NIH -- "National Institutes of Hannah"
Saturday, July 18, 2009
Not Superwoman
Much to our delight Lily & Jim arrived on Wednesday night. As soon as Lily saw me, she let go of Katie's hand & yelled "Mam" and came running to me. Oh, how my heart was soooo happy!!! I just cried -- finally being able to hold my most precious gift from China. Thank you, Lord!!! It had been one month & 4 days. Unbelievable.
Truly, it is to Kim's credit that Lily even knows me at this point. Kim shows her pictures of Hannah & I all the time & tells her how much we love her. Thanks, Kim .... I just can't imagine walking this nightmare of a journey without you by my side as best friend, sister & "Auntie Mam". I will make sure Lily is constantly reminded of your love as she is on the East Coast for part of the summer :-)!
Friday was clinic day for Hannah. She required 2 units of packed red blood cells & a unit of platelets. I think we got there at 8am & left around 6pm. We were put into a room by ourselves because Hannah had thrown up on Thursday & has been having other intestinal issues (yes, diarrhea, if you want all the details). Towards the end of the day, the social worker came in to tell us that Hannah wouldn't be allowed back at the Children's Inn this weekend because they are testing her for C-Diff (and they can't risk a spread of that to the other kids at the children's Inn). Thinking we were about to be homeless, he told us the NIH was putting us all up in a hotel in downtown Bethesda. What a country!!
I am actually at the hotel by myself tonight because Jim took the girls up to Philadelphia to get a lot of our stuff that we left at my parent's place (we were all there on Wed / Thurs). I was going to go but just couldn't get myself together.
I am beyond done right now. Toast. Cooked. Fried. You name it ... I am a goner.
The past 7 & 1/2 months of endless hospital stays, port trauma, set-backs, etc. have just overwhelmed me. I know myself and I know I will get a "second wind" but right now I am just D-O-N-E. I had to take advantage of Jim being here & take a night as a breather for some time to myself. Time alone is very hard to come by ... as you know, 2 minutes alone in a public restroom can be a very big deal at this point in my life :-)!
I have been with Hannah 24/7. Even at night. She sleeps with me & she practically sleeps on top of me. She literally sleeps in the middle of our full size bed at the Children's Inn. Since my laptop has been broken, she even comes with me to the business center at the Children's Inn. Can you say ... I never get time alone!!!! Whatever ... waah, waaah, waah. I feel like a big complainer right now ...
Yes, I know I should just be grateful. Grateful that I have my Hannah -- and I am. Grateful that she wants me to be the one near her -- and I am. Grateful for a place to stay at the Children's Inn -- and I am. Grateful for these summer days in Maryland -- and I am.
I am grateful and I am blessed in so many ways.
But I am exhausted. I am not Superwoman. No matter what Alicia Keys says.
Tuesday, July 14, 2009
H.R. 402 ... Otherwise Known As: "Hannah Rose" 402
Speaker of the House as she was walking towards us ... "Hi, Nancy!"
The best part of the day was that the Congressman that Abby works for, Doug Lamborn (CO.-Rep.), came out to meet us. He was in between voting so he had to run back into the House of Representatives to vote. Hannah was fascinated with his voting card so he invited her to come with him to vote on the next bill, "H.R. 402". He took her to the floor of the House of Representatives & allowed her to actually place the vote for him!!!! Cameras were not allowed so I don't have a picture of Hannah voting but perhaps if you were watching C-SPAN this afternoon you may have seen Hannah in the braids!!! Jim will be very proud -- Representative Lamborn has a 100% Conservative voting record.
Less than 24 hours until Lily arrives with Jim & Katie!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-- James 1:12
Monday, July 13, 2009
Day Hospital & Make-A-Wish Phone Call
We were all up early (me, Blair & Hannah) to go to the Day Hospital across the street. Hannah's port got accessed ... without any issues, thank you, Lord!!!!!! Nurse Debbie is in the day hospital is rockin & Hannah LOVES her. She knows just how to talk to Hannah & how to work with her. I am SO thankful!!! Nurse Amanda doesn't work in the day hospital or I am sure we'd still be loving on Hannah's "Lady"!
Hannah got IV anti-biotics just to be safe from the fever she had this weekend. We spent about 4 hours at the hospital today. Afterwards Hannah & Blair went to the mall & grocery shopping.
Tonight Hannah had a conference call with the Make-A-Wish team. She decided her top pick for Make-A-Wish is a shopping spree at American Girl Place & Limited Too. Her second pick is to be in a movie with a speaking part. She has no interest in being an extra on the movie set -- too funny!
Tomorrow afternoon we are meeting our Pastor from California & his daughter, Abby, who works at the US Capitol. We are going on a tour of the Capitol ...thank you, Abby! Hannah is very excited!
We are very excited for Jim & Lily to arrive on Wednesday night. It has been so long since we have seen Lily ..my heart is going to melt all over that little pumpkin!!!!
Hopefully we can have a few days of normal. Well, whatever "normal" is at this point. I can't even remember what it is like to load & empty my own dishwasher.
We are praying for this ATG treatment to kick in & bring Hannah's bone marrow back from the "cruise of the century". God is good & we are continuing to trust Him for Hannah's healing even though this journey has been much longer than we ever thought it might be. God knows ....
All God's best from Children's Inn at NIH --
Sunday, July 12, 2009
And Just When I Thought It Was Safe ...
Hannah got a fever.
Nothing like hailing a cab at 3am outside the hotel in DC to get back to the NIH. We then spent about 10 hours at the hospital & now we are back at the Children's Inn.
And just to add to the humor of it all, Hannah hasn't had another fever since last night when I left the hotel.
Can you even imagine!?!
We go back to the hospital tomorrow morning for Hannah to get some more IV anti-biotics as a precaution.
All God's best from our room at the Children's Inn :-)
Saturday, July 11, 2009
Bye, Bye, Bye!!!
Hotel is booked & I am off to be A-L-O-N-E for 2 glorious days!Can you all hear me singing with glee as I pack my bag????
Don't anyone expect to hear from me ... I am toast.
Friday, July 10, 2009
Great Day for Hannah
Hannah & Mommy in front of US Capitol a few nights ago
Today started super early - got to the outpatient clinic at 7:40 am to get Hannah's port accessed & see if she needed transfusions. The port accessing went awesome -- THANK YOU, LORD!!!! Hannah needed platelets & red blood cells. Her platelets were 5k (hello L-O-W!??!), hemoglobin was 6.9 & white blood cell count was 2.4.
Hannah was eager for her transfusions to get finished because she had a big date after the clinic with one of her favorite nurses, Nurse Amanda (otherwise known as "Lady"). We met Lady on the train platform at the zoo & they went off for a mini-field trip together. Blair, my wonderful cousin, & I went off to Union Station for some fun. Hannah had a blast at the zoo & loved the special attention ... Thank you, Amanda!! I am so thankful for the wonderful nurse that you are & the way you have connected with Hannah!
Tomorrow night Hannah is going to a Baltimore Oriels baseball game with cousin Blair. She is so happy to have Blair here. Blair is fun, easy-going, caring & so incredibly helpful. Hannah has no idea what a relief it is to me to have Blair here. She thinks it is all for her but wow does it help me SO MUCH to have Blair here to spend time with Hannah!!!!
I might just get to enjoy some time a-l-o-n-e.
You know you need time alone when you get excited upon realizing in a public restroom that no one else is in there. Just to be alone! In the midst of all these hospital stays & stuff, it makes even the smallest things (2 minutes alone in the restroom ) feel like a luxury!
Psalm 46:1
Random pics of princess Lily
Knuckle bumpin' the water at Guasti Park. Lily is now working on her double knuckle bump skills... If one is good, two are better. All the kids had a really fun day in the water and Lily even asked to take a little nap!!!
"Uncdole...Walk?"
Helping Auntie-mom turn on (or off) the dishwasher. That appliance is getting a lot of use lately.
Notice our pretty-pretty nails???Thursday, July 9, 2009
Where I Grew Up ...
We are here at my parent's place where I grew up & going back to NIH this afternoon. My 22 year old cousin, Blair, from Indianapolis is coming to NIH to hang out with us & help with Hannah ... and Lily, when she gets here next week!!! Thank you, Blair!!!!!!!!!!! I am so grateful to have you coming ... you are the best & Hannah LOVES you!!!!
Hannah's appointment at the outpatient clinic did not go well on Tuesday. Her port accessing was a bit of a nightmare .... at poke #4 we got enough blood for all the vials that needed to be filled. Poor Hannah was BESIDE HERSELF .... oh my goodness. I don't blame her for an instant. Poor thing! We have a game plan for Friday morning's clinic appointment & I am just hoping things will go much better. Truly, Hannah needs things to go much better! After all the trauma, Hannah did not need transfusions -- her wbc was 3.3; hemoglobin was 8.2 & platelets were 22.
Although we are out of the hospital & appear to be having vacation on the East Coast. I was reminded last night when Hannah asked me to take her temperature that things with her disease can change in an instant. In those 2 minutes waiting for the thermometer reading, I was mentally getting ready to jump in my mom's car & head back to the hospital at NIH. There is no plan with Aplastic Anemia. No road map to follow for her treatment schedule ... we just go from one situation / complication to the next -- with many fun & happy times all mixed in everywhere. Her temp was 99.1 so we got to stay at Grandma's for one more night!! :-)
Last night we celebrated my nephew's 13th birthday ... Happy Birthday, Dave! Hannah & my mom made the cake & Hannah decorated it all by herself. She also made the most precious card for David ... a treasure & she thought it was hilarious to tape a penny inside her card as her "gift" to David. Oh my. Hannah had a blast hanging out with her teenage cousins & laughed so hard that it required a change of clothes ... good times!! Thank you, Lord!
Monday, July 6, 2009
Fun times on the 4th
We took Lily to Silverwood Lake on Friday. She LOVED driving the bo (boat) and the bigger the bumps the better!! She laughed so hard every time we bounced over a wave.
(Isn't she so cute peeking over the top!?) Lily really enjoyed being in her pack-n-play because she didn't have to have her life vest on. She laughed, read books, played with toys and even fell asleep 2 times. She laid on her back and held a book in front of her as if she was really reading. Maybe she was? She was a fun addition to our boating day!!
Uncdole (uncle) and Raw (Ryan) were playing cards and Lily decided she wanted to join the party. She sat in the chair, held her own cards and played for quite some time. She was very intent on winning as you can see!Relaxing Weekend Together
Hannah & I have been camping out at the Children's Inn ... just having fun & doing a lot of nothing. Last night we stayed up until 4am watching Food Network & Disney Channel. Today we rode the Metro to DC & spent time at Union Station (love that place!!) and then we walked to the Capitol & the White House. I pushed Hannah in a wheelchair since her energy level is low from low hemoglobin. It was a great day just being together. I have really enjoyed just having some "Hannah time" ... even though we have certainly had a lot of time together in the hospital all these months. This has just been nice to be at the Inn ... away from it all & out of the hospital.
Tomorrow we go to the clinic at the NIH for Hannah's first "outpatient" appointment. They will access her port to check her blood counts ... please pray that she does OK with the port accessing ... sometimes it can be emotionally traumatic for her despite the many times she has been through it. I don't blame her ... I'd be nervous too if someone was going to stick a 1.25" needle into my chest!! If her counts are low, she will get transfusions. I expect she will at least need platelets.
Tomorrow night we are going to Philadelphia to stay over at my parent's place. Hannah is excited ... she gets to sleep in the room that was mine as a kid.
I haven't been able to get online too much because my computer totally broke. It is now at the Computer doctor so I have to use a community computer here at the Children's Inn. Hannah is right here next to me so I'd better go ...
All God's best from the Children's Inn at NIH --
Saturday, July 4, 2009
At the Children's Inn
Hannah got discharged yesterday from the hospital!!!!!!!!!!!! We packed up her room, took all the pictures off the walls, loaded up a wheelchair with all our stuff & walked across the street to our room at the Children's Inn (a hotel-like place for families with ill kids). It is so nice to be in a room by ourselves for a mini-Mother/Daughter weekend of sorts. :-) Today we went to the grocery store & the mall for a few hours. Hannah & I each got some new clothes since we are going to be staying a bit longer than we anticipated ... any excuse to do some shopping :-)!
It is surreal to think that one year ago we were waiting for our referral picture of Lily & enjoying our vacation at Lake Shasta ... I am praying that in 2010 we are up at Lake Shasta for some July 4th fun!
For now, I am just sooo grateful to be here with Hannah after all these past 7 months have been. She is such a trouper & I couldn't be more proud of how well she did during this ATG treatment, serum sickness & pneumonia.
Thank you, Lord, that she was discharged from NIH!!!
Happy 4th & All God's best from the Children's Inn,
Wednesday, July 1, 2009
Doing Well
Nothing makes my heart happier than coming online & seeing the pictures on the blog of miss Lily .... we are counting the days until we see you, Lil!!!!
Happy July!!
Hannah seems to really be doing so much better today!!! She was a champ in the MRI machine for 25 minutes plus. If you have ever had an MRI, you know how unnerving it can be but Hannah did awesome. No fussing & stayed still the entire time. Now if she could only be so amazing when it was time for a bath, we'd be all good :-)! Ha.Ha.
She looks so much better today ... she is off the morphine pump & not as itchy. Also, they are tapering her steroids so that should help with just about everything! My sister got here this evening with her 15 year old, cousin Sarah. Grandma went home today ... thank you, Mom, for 17 days of being here in Bethesda ....not to even mention all the months back in California. You are a-m-a-z-i-n-g!!
Hannah is about to get a transfusion of platelets & I am off to bed!
I feel like we are through the thick of it with her treatment .... now the waiting starts all over again. I am hopeful this treatment will work but also I am "emotionally bracing myself" for what might be ahead if we have to do something else.
All God's best from Room #1652 at the Clinical Center of NIH --
Lily loves Mam, Da, and Haa-nah!!!
Lily is always thinking of ways to make everyone laugh! She has such a fun, sweet personality.
Learning to ride the hippity-hop! Lily has mastered climbing on, and rolling over the hippity-hop ball. She is working hard to learn to do it all by herself! Still needing a little help from Auntie but almost there. 
Just thinking about how much I love and miss Hannah and Mam! 
