A good meeting

Katie finally got an appointment with Dr. Wood, an allergist at Johns Hopkins on Friday afternoon. The appointment was going to be for, amongst other things, a back allergy test, where basically they cover your back with about 50 different substances to ascertain which things she would be allergic to. Kate wasn't thrilled at the thought of enduring this one. His office had called to confirm the appointment Wednesday and informed us to stop the Benedryls for Hannah immediately - we were giving her between 4-6 each day to help her out. So by Friday afternoon, her arms and legs were covered with the rashes and hives and had turned a blueish/purple tint around the hives. As soon as they saw her, they cancelled the back test, as they didn't think that would be necessary at that point. Lo and behold, Dr. Wood agreed with our parental intuitions that this was probably the result of Hannah's body reacting to the blood transfusions she got during and after her surgery. He said that even though the blood type was correct that Hannah was given, i.e. the same as Hannah's, there are proteins within the blood that your body can treat as foreign invaders. He stated that if the rashes and hives were the result of the blood transfusions, the body would correct itself after 6-8 weeks. We're at the 5 week mark since her operation, so perhaps we have 3 more weeks of this. He gave us two medications to help manage the rashes and make Hannah more comfortable - they seem to be working as her hives have lessened the last few days. He said that if the rashes don't disappear after the 8 week mark, that they would need to do a blood test that would definitively show what the cause of the rashes were. He also recommended us to see Dr. Levey at Kennedy Krieger, whom we have seen previously, about her low blood pressure and discoloration in her legs. Katie left the meeting relieved that at last she talked with someone who could somewhat explain the rashes and hives and their cause. Thus, Hannah is feeling and looking better this weekend and that helps our stress levels and our moods.

We hope everyone has enjoyed the wonderful weather this weekend.

With love,

Tim Katie Carly and Hannah

Getting into A New Routine

We have been so busy this last week getting into a new routine. Hannah is getting PT, OT, and speech starting soon from Holy Cross Health Care. Hannah has baffled us with the continuation of daily break outs of hives. This is now 3 1/2 straight weeks of this and daily we have to give her at least 4 benedrylls (100mg) to even help her. Her blood pressure has also been much lower than normal and her coloring all over the place. I will need to order a pediatric blood pressure monitor today so we can keep a closer eye on this. So Tim and I have been filled with worry and consumed with trying to find the right doctor or where to turn with this. We have already talked to the surgeon and rehab doctors. This is what is hard about our health care system. You have to trust your instincts and have some background knowledge when to know things are not right. But then you don't have all the answers so you have to go advocating even when it wears you out...to keep asking and trying to get to the base of the problem. I am so fortunate to have the time...support...and experiences to keep the course and not give up until my instincts are at rest!

We took Hannah to see Dr. Taylor, her pediatrician, and he is trying to help us see a specialist in the allergy and immunology field, Dr. Wood at Hopkins. If not this we will need to see a neurologist as well. Hannah is very scared in the car. I don't think she is hurting but little whimpers come as she probably feels all bumps in the road and knows she is weaker.

Carly started her 3 hour per day drivers ed class last night. She and I survived her 31/2 hour wait at the Clopper road DMV to get her learners. Thought she would crawl out of her skin with all the different lines and waiting but came up with the prized photo/card at the end. Now to figure out how to teach her how to drive with two big vans...

Hope you all are having a great rest of your summer. Will keep you informed of Hannah's progress. Thank you for the cards, dinners, and acts of love!

Love, Katie....and the Larkins 8/5

Home Sweet Home!

Hannah seems genuinely thrilled to be back home. There's only one thing missing and that's Carly, who should be back in the nest Friday night.

Hope everyone has a great weekend.

Tim and Katie

Homeward Bound - Let the Countdown Begin!

Very good news to post today; barring no major setbacks or unexpected illnesses, Hannah will be released from Kennedy Krieger Institute on Thursday, July 24th. She has come a long way in her recovery and is working extremely hard in the therapy sessions.

We are very thankful for the surgeons and nurses at Johns Hopkins Hospital, and the nurses, doctors, and therapists at Kennedy Krieger Institute. They are all amazing and we are deeply appreciative.

Yeah!

The Ledo's pizza never stood a chance!

Wow, what a weekend!

We had a very short and strange weekend shift this weekend - Katie got a little over 24 hours of freedom starting Friday afternoon and was busy the entire time between running errands and getting Carly ready for her week's stay at Villanova University for a leadership conference. She did get to squeeze in a massage and the therapist never left her shoulders and neck; go figure, there was an abundance of stress in Katie.

Meanwhile, Tim showed up on Friday with a LARGE Ledo's Pizza; that's 30 squares for you non-numerial types. It was gone by lunch on Saturday; I don't think the pizza knew what hit it. I had to stop her on Friday afternoon and night because I couldn't stand to watch her devour any more. It is very difficult for a Dad to say no when his child, who's been hospitalized for almost 3 weeks, continues to ask for "more pizza." What, this tastes better than hospital food?!?

Katie and Carly showed up Saturday night for a quick dinner and changing of the guards, and on Sunday Tim drove Carly up to Villanova. Carly was introduced to dorm life; 2 beds in a space much, much smaller than her bedroom and no A/C. I believe I heard "sweet Jesus" escape her lips. This should be an adventure..

We hope veryone had a great weekend.

Thanks for the support and well wishes,

Tim and Katie

Upright stander

This afternoon at therapy Hannah was in an upright stander for about 30 minutes. We played with a toy and listened to music while socializing with everyone and anyone who walked by her.

She had a blast!

Workin So Hard!

Hi all,
We have been so busy Hannah and I from 7:00 am till 10pm. We have 2 physical therapies a day, 1 occupational therapy session, see the equipment people, have 3 play therapy sessions and have our daily nursing routine. Yesterday, they put Hannah in a stander so she can get use to putting weight on her legs again. She looks like a skinny giant!

Our dear friends, the Rubins, helped us get junior size clothes because Hannah's shirts pre-operation spine....are showing her midriff! With the huge growth in size comes junior department now!

Hannah's GI tract is slowly getting back to normal! Hurray "operation Constipation" can be over for now! That is making Hannah's appetite come back slowly too! Right now she is munching on some noodles with mom's homemade veg...soup on them!

Today I get a massage for 15 minutes in the social worker's room. Yeah! Looking forward to that and an afternoon walk if I can sneak away during Hannah's nap.
Hope all is well with all of you. Miss you. We will continue to work hard so we can come home soon.

Katie and Hannah

A good Saturday

Hannah has had a good Saturday. Two good physical therapy sessions that went well with lots of stretching, transfering to a sitting position from laying down and over ten minutes of sitting up. Katie is absolutely correct, because of her growth spurt, her hands can't reach the mat when she sits up, so she needs assistance from her therapist.

We have reacquainted with old friends here who remember us from our big visit 8 years ago; Dr. Davoli and Victoria have stopped by and are amazed at how tall Hannah has gotten over the years and the pace of her current recovery. We had another special guest today, Ricky Moskowitz, who works with Tim at Raxco. He came with gifts for both Tim and Hannah; Ricky's daughter Sydney was sweet enough to go to Build A Bear and give an adorable bear named Cutie to Hannah, who has hugged her endlessly since receiving her. Ricky also brought two incredibly delicious corned beef sandwiches (their specialty) from Attman's Deli in Baltimore for Tim, they were fabulous. Hannah's appetite was much better today as she ate a whole plate of spaghetti tonight for dinner.

That's about it for now; hope everyone's weekend is going well.

Tim and Hannah and Cutie

The Weekend Switch

Thanks again for helping us stay in touch with all of you! Hannah is working so hard and like Rena said, it's true our day is full of medications, working, hugging and sleeping. Hannah can not sit up anymore so we are working on that but because her upper body grew 3 plus inches, her finger tips are the only things that reach! She looks like that game "Tip It" as we are right there to support her.

She is not eating very much...and are working on that. The last two days she has broken out on knees, back of knees, and elbows in a hive like rash. Hannah has really sensitive skin. We are trying to figure this out but it may be the mats she works or the cleaner they use between each patient. Tomorrow she wears long sleeve clothes and we put a sheet on the mat to see if she still breaks out. We are keeping a close eye on two pressure sores she has developed but all and all she is good. They had her rolling over and over yesterday, and working on some tight right sided hamstrings and hip flexer muscles.

Tim came up Friday evening with Carly. Hannah was really happy to see them. Tim brought fresh spaghetti...better than Dino's. When I go back on Sunday, we will try Ledos Pizza or McDonald's Hamburgers compliments of our Rubin Friends who also sent her "Hannah Hamburger shirt!!!"She earns the name well!

It was great to be off the chair bed and in my own bed last night. Even felt good to run the vacuum and pick up the dog hairs as you don't get much cardio work out and vacuuming last night...(not usually was very therapeutic...why is that so...perspective is a powerful thing!)

We are blessed to have really great roommates (Julie and Emma) and for living so close Carly got to see how small a room we have 4 people living in and two wheel chairs. It gave her a good visual for college! It's just a little funny that Emma only eats eggs, cheese, and pudding everyday and Hannah eats hamburgers and spaghetti, so between them we see the same foods for most all meals!

Our very good friend, Todd came by to see her yesterday, he works at at Bayview J Hopkins and he said she looked good! He looked great to Hannah who has always been smitten with him.

Today when Carly gets up we are going to spend the day together just hanging out. It's nice to get dates like this too while Tim gets caught up on his Hannah kisses. Hope everyone has a great weekend.

-Katie 7/12

Time for Rehab at Kennedy Krieger

We are now at Kennedy Krieger. It's time to learn about this new body that is very much taller, heavier, stiffer, and weaker! We even have to teach Hannah how to move her head and keep from keeping it tilted!

Mike worked on Hannah's wheelchair to help make it better for her. She is arching so much...we have decided to make the chair recline so her back mussels don't have to work so hard. She is getting up 2 times a day for about an hour...but that wipes her out she sleeps soundly the rest of the day.

I walked 5 blocks and found her spaghetti at Dinos...and she ate 8 spoonfuls last night. Not her usual plateful but it's a start. She is drinking good.

She had 2 pressure sores we are keeping our eye on but hopefully turning her every 2 hours and putting gel pads will help these areas heal.
We are amongst some amazing inspirational and sad stories here at Kennedy. 2 children have lost their entire family; one to a fire and one to a car accident. So it's a real reality check and gives one perspective. This children are amazing and have such a will to heal and survive. It is a blessing to witness this and live with other parents who have had difficulties.

Thanks for your continued prayers and support. Please be sure to include all the 76 other children who are with us.
-Katie and Hannah

Worn Out....The bed never looked so Good!

It's hard to consentrate right now and we are thankful we don't have a roommate at the moment because Hannah's snoring could shake a house. She went to xray for a photo shoot. She was smiling for the camera on at least 12 pictures of her spine, neck, hips etc. She loved the attention and that Mindy, Kim, and Maureen all had pony tails!

She is off jello diet! Someone needs to research alternate uses to red, green, yellow, orange jello hospitals produce. I have seen many trays go and come and the colors of the rainbow are still uneaten. Hats off to the scientists who could turn jello into an alternative fuel source !

Today the goal is to take the foley catheter out and now we will begin to cath her.
Get her to eat and drink more.
Have her sit up at least 3 times for an hour each.

If we can do these things and have a good day without too much pain, we may head to rehab tomorrow. They have nursing but many more therapist that can help us with handling her and help with her overall stiffness and turning her head and neck.

Hannah is loving our nurse Heather. She is amazing and grew up overseas. Her parents are missionaries and she is such a burst of sunshine, that the Larkin family and Hannah are smitten.
She has already played "noseies, and given Hugs which for Hannah are just as good as hitting the pain pump.

Carly is well taken care of this week as my niece, Heather has cleared her schedule to take Carly where she may like to go. We are so thankful for the many people who have helped us all get so far and for Hannah being a real trooper!
-Katie and Hannah 7/7

she grew, so we're adjusting her wheelchair

Hannah sitting in her wheelchair

Hannah sitting up

Sunday update

Just a quick update from the 9th floor:

Hannah had a pretty decent night, or as best as she could with her vitals being checked every hour, and having her body moved every two hours (to avoid bed sores from staying in the same position for too long and to stretch and move her spine). Tim spent the night at her bed side last night, while Katie and Carly spent the night (our last) in the townhouse - many, many thanks to Lynn Rubin for recommending it to us. The townhouse was great while Hannah was in ICU; parents can't sleep in the ICU rooms so it gave us a sanctuary away from the hospital (just 2 blocks from the front door) where we could rest and relax while she had 24/7 bedside care. However, now that she's on the 9th floor, and we don't have a nurse dedicated to just her room, we will be staying in her room and sleeping by her side and assisting more with her care.

Some news of note today:

* Hannah is in incredibly good spirits. Laughing, tickling, hugging and kissing.
* She had some blood drawn at 6:00am and still needs some calcium and potassium - very normal with the loss of blood she had.
* They have removed her from her pain "drip." We can still hit the pump as we seem fit, but she doesn't appear to be in any pain - perhaps because she's had so many operations before and has a high tolerance of pain, or perhaps because she may not have had full sensation in her back to begin with because of the scoliosis. Whatever the reason, she is very comfortable and content.
* That may change this afternoon, as the doctors want her to get in her wheelchair. We'll see how that goes..
* She had her first bowel movement since Monday this morning. That's gotta feel good...
* She is getting the spa treatment from Katie and Carly - shampoo, body wash and nail clipping. It's difficult for Carly to work because her sister is mauling her with hugs and kisses.
* We changed her surgical dressing also today. Her spine looks straight and the rest of her body also.

One last bit of news today: Did you know that a teenage girl taking a hot shower (not to give away her identity but her name rhymes with barley) can set off a smoke detector not once but twice? Neither did I.

Have a great day everyone. Thanks for the love.

Tim, Katie and Carly.

Reunion! And exit from ICU - Yeah!

Just a quick update on Saturday afternoon:

* Hannah has left ICU and is now on the 9th floor. YEAH! Nice big room that we currently have to ourselves.

* Tim went to pick up Carly after her stay at the beach and brought her back here for a special surprise for Hannah. The look on Hannah's face was joyous and the two have had a love fest since.

* Hannah is on her best flirting behavior; thus all the nurses and doctors have been subjected to hugs, kisses and questions about their names.

We're enjoying a nice family reunion.

Hopefully moving to New Address Today

Happy 5th!

Last night we saw and heard lots of fireworks,although we heard lots of sirens so we hoped some of those weren't gun shots. Hopkins is not exactly in the best part of town. I did have all eyes on guard as we walked back to the townhouse at 2:00 am last night.
We continue to celebrate today as Hannah is slowly getting rid of machines. Today we got rid of the n-g tube! Hannah's face looks like a bad waxing job due to all the tape that has been on her face but besides that she has even given me a big smile.

If she continues to take sips of apple juice and her lab works continues to look good...we may be moving on out of here! Our new address will be 9th floor! This is good news.

The real medicine will be when Hannah will get to see "Tarly." Evidently Carly just got back from the beach and is anxious to see her little sis. Can't wait to see the smile on Hannie's face.
I think I may get the camera out for this one.

Independence Day

Today is Independence Day for Hannah!

She is no longer connected to the breathing tube! (bragging time - first words out of her mouth were "Tim.")

She no longer has the blood draining from her back!

She is elevated in bed and has her eyes open.

She has watched a Barney on TV.

She is watching a slide show of family pictures - Carly's Sweet 16, family beach pictures, etc.)

She is trying to pull things off her body. Nice try, but the hands are restrained.

She has asked for her wheelchair; i.e., get me outta here!

Very good day so far.

Have to go, they're doing a chest xray.

Happy 4th of July everyone!

With Love,

Tim and Katie

A Meeting of the Minds

Quick update at a little before 6:00pm.

A wise doctor who followed Hannah once told us that treating her is like treating an elephant; depending on which part of the whole you're looking at, and what your area of expertise is, you can get 100 different diagnoses that are all designed to help each particular area, but may not help the overall condition of the patient. Thus ends my Zen lesson of the day.

It was determined that another blood transfusion would help her swelling and fevers and alleviate the burden that her system was going through. That removing the breathing tube was not an option today. And that leaving ICU was not an option today. They have increased her pain meds because of her discomfort level and they are giving meds around the clock for swelling and nausea.

Hannah is telling us all that she needs to go slower than perhaps what others want or wish, but it WAS a big operation, and she DOES have screwed-in rods from her neck to her tailbone, and her body is adjusting to a fairly big trauma to it.

So here we are, feeling better knowing that she is going to be more comfortable and getting all the help she can.

A small step backwards

We had kind of a rough night - which is to be expected and not out of the ordinary. Here's a quick recap:

* Hannah was nauseous last night, which was rough because of the breathing tube in her mouth. It was stomach bile, which may have been caused by the iron supplements they were giving her because of the extreme loss of blood. We asked to stop the iron, as on an empty stomach it can cause discomfort and nausea.
* We had to re-tape the breathing tube because the tape was covering her mouth - hard to breathe when your mouth is covered and exasperated by the vomiting.
* She was feveral, so they gave her tylenol to help with that.
* She was puffier in the face and hands, so they are continuously giving her lasix (sp?) to help her void (pee) the excess fluids. They were just giving the lasix periodically.
* She was stiff and resistant to any movements to her neck - hello, she was through a big surgery and has rods in her spine!
* They are redusing her pain meds to get her more alert and breathing more on her own and less dependant on the breathing tube.
* Because of the lower meds, she is showing us more discomfort and pain. She refused to sing the sister song or look at a picture of Carly, the dead giveaway that she wasn't feeling well. Tim was hitting the pump, unfortunately none made it into his bloodstream.
* She has an incredible amount of thick, bloody mucous (sorry if you're eating while reading this one - bile and mucous, the Larkin's in ICU!) in the back of her mouth that needed to be suctioned out; this was too much for Katie to watch. Unfortunately, the suctioning would induce Hannah's gag reflex, which produced more nausea.
* So, how ending on a good note Tim? She just passed a breathing test for lung power, so perhaps today they may remove the breathing tube.
*Also, they have some special "socks" and a "therapeutic tube" on her legs to help her circulation. They're a pain, but helpful.

That's about it for now. We're hoping for a quiet day.

Baby Steps..to recovery

It's noon and Tim and I feel 100 percent better than yesterday. It's amazing what sleep, prayers, and a good shower can do for you. Thanks to our dear friend, Lynn we are staying in a townhouse 1 block from the hospital.

Here is the good news we got so far today. Yesterday, Hannah lost her total blood supply. (Glad they didn't tell us that yesterday. She needed yet another transfusion last night (4 in total I think). The resident said that the blood loss came mostly at the end of the surgery. He said that this is a little shock to one's system. So for the next 48 hours we are looking for baby steps. If she gets better the next step will be to get her off the breathing machine.

We want you all to know that this is such a comfort to read your thoughts and comments. I know it's not so private , but the ability to use wireless right in ICU (where we can't use cell phones) is amazing. If you are curious how to help...guess what..you are already doing what is the most important right now! Giving prayers and support. Thank you for doing this for us!
This am the good news is:

1. They took her off Fentenell (sp?) a medicine to help regulate your blood pressure. It is still low but she is holding her own. They did an Xray of her chest and lungs, and we guess it looked good.

2. Her face looks a tiny bit less swollen, as does her hands.

3. Hannah opens her eyes..and shakes her head "no" to our singing! She is aware enough to know we don't have good voices...or we are not singing the right song she wants! She is moving her hands and toes, which is great. She is "mouthing" things to us, and seems glad to see us.

4. She can't talk but mouthed "Tarly" her name for her sister, when shown Carly's picture.

5. She is bleeding a little less from yesterday from her wounds on her spine.

Thanks for all your love and wishes,

Katie and Tim

7/2 12:40pm

t

Hanging on in ICU

Hi everyone,
Hannah is hanging on. She is in ICU and out of it. She is getting another blood transfusion as we speak. She has squeezed our hands and opened her eyes a bit. Her blood presure is lower than they like so they are giving her more blood to help with that.
Doctor Sponseller said that she is much straighter now but she bled a lot in the OR. They had to give quite a bit of blood in there. She is also very puffy and swollen. That should get better.
Now we need to channel our prayers that there will be no infection from this.
They are going to keep the ventalor on her for now. Our nurse doesn't leave the room and the head of nursing knows us from previous surgeries. It's so nice to have so many friends in all kinds of places. Hannah said she will "fight hard" and "be strong" right before she was taken from the Pre-Op room. She keeps her promises.
7/1 at 5:50

Hannah's in the OR

Hi friends,
We had to wake up at 3:00 am and give Hannah a shower with special soap to prevent infection. We did this last night as well. To her credit she didn't mind singing about her family and her beloved "Lucy" so early.
Last night we did the usual, spaghetti dinner...this time at Mama Lucia's her favorite.

She was good up until we went in the OR and tried to calm her down by singing. Thank Goodness the gas mask works so quick.

Today is the day the new staff, residents, fellows etc. come on board, so Hannah was the subject of about 10 newcombers. We thought she would be scared but our little Miss Social was flirting asking each their names. Does she know how to work a crowd.

Tim is being productive and my brain already hurts from only 3 hours sleep...Just like when the kids were babies. The doctors said they may not need the neurosurgeon, it just depends how the spinal cord reacts when they start bending or cutting the bone. The actual surgery will be about 6hours...plus prep. It took them 2 hours before they started.

Thanks for your support. We are feeling rather positive, loved, and calm right now!

Getting Ready for Tuesday

Hi everyone,

We really appreciate this blog site so that we can effectively keep you all informed on what's going on and also feel your support.

Last week we went to Bethany with the family. We were able to relax and slow the pace down.

It was good to all be together as a family as that will soon not be the case for awhile.

Hannah especially loved time on Gayle's deck, long walks on the beach at Fennwick, eating fries and hamburgers at Mango's deck, and hugging most of the Delmarva!

We got a call Friday afternoon that we have to go get some more cardiology tests done on Monday at 10:00. Hopefully everything will be fine to go ahead on Tuesday.

The surgery will be long and we will try to write late Tuesday night.

Thank you for all your calls, prayers, and offers.

We are good for this week..but will let you all know our needs as they come up.

This evening I gave Hannah a haircut...So glad she doesn't know that scissor skills aren't one of my talents.

Thanks for everything,

Katie and Tim

Establishing this BLOG

Welcome to the blog established by friends of Hannah and her family---

This is intended to be a place of love, support, comfort, information, and prayer. This online community is where we can all check in to keep up with Hannah's progress--connect with Tim, Katie and Carly and offer words of love and support.

Hannah is a loving young lady with amazing strength and fortitude. As she begins this new journey toward healing on July 1st-- She will be divinely cared for simultaneously with her earthly care and support. You are a part of that divine partnership.

Love,
The Friends of Hannah and her family