Pre-Op

Henley was awake and visiting with everyone at the clinic most of the day. When we left, she fell asleep and has gifted me time to eat, check in to a different hotel, shower and now post this update! Wow - I guess that's what happens when you just have one little cat nap during the day.

Less than impressed with the hotel last night. So I checked out early and changed today. After 12 hours of travel yesterday I didn't have the energy to change rooms last night- bed was clean, so we made use of that and made the change this am.

Instead of "doing stuff" during what is Henley's usual morning nap, I decided to join her and got in 2 extra hours of rest. Which was awesome. I even got to load up the luggage cart before she woke up! It's amazing and kinda stupid how much STUFF you need when you travel with an infant.

If You See Someone Struggling - Help
Took the loaded cart and Henley (in her Tula) down to the lobby to check out and that's where the day started to feel lonely. As the elevator doors opened, I tried to navigate the cart out the doors and sure enough a couple things fell off the cart. I tried to catch the door, but wasn't fast enough. Hit the button on the elevator, but again wasn't fast enough and instead I watched the numbers climb as my stuff rode up to the 11th floor. When the elevator came back down my stuff was still in there. Upside down and laying on the floor. A guy looked at me, my loaded cart, my strapped on baby - smiled and walked out of the elevator. I went in and started trying to collect things and the other stranger kindly stepped in and asked if he could help me at all. He stacked the stuff back on the cart and helped me roll it towards the door.

Why a hotel? Mostly because I really needed quiet time with Henley. Time to just fully focus on her and not feel the need to interact with others. Time to rest.

We ice skated the car to the hospital for appointments today and arrived a couple hours early. Henley and I wrote prayers on paper notes and hung them in the chapel tree for one friend who is on hospice waiting for God to send his final call and another friend who is desperately looking for an HLA match. We watched the fake (electronic) fish aquarium, which Henley LOVED and then we met Elaine.

Elaine has been volunteering at the hospital since 2011. She is elderly and disabled and rides a metro transit vehicle from her door step to the hospital once a week to teach people how to knit. So, she did. She got me all set up with yarn and needles and taught me how to be a "picker." Several times during our visit I heard myself exclaim like a child "Look at me! I'm doing it!" And she would say, "Yes, I noticed!"

Our visit with the surgeon was less than impressive. I'm sure he's skilled with the blade - but he REALLY lacks people skills. We are comforted to know that we will be admitted under our hematologist's care at the hospital. We are very comfortable with her and trust she will guide us over the next few days as we transition to this new normal.

Several has asked if they can visit while we are in the hospital. My thought as of right now is to wait until we get into a room after surgery and they give you all an update.

I have a terrific friend who will sit with me at the hospital tomorrow while Henley is in surgery. She has a cool and clam personality like Kyle since he can't physically be there.

We've been told surgery will start at 7:30am and is expected to take at least an hour, plus add on more time for the bone marrow biopsy. We greatly appreciate all who will be participating in the prayer chain our church will activate when surgery begins. I will post an update as soon as I can.

Surgery Scheduled for December 29

I prepared a pretty lengthy post to go on the blog about our last 72 hours of travel (1404 miles total) and doctor visits but have decided not to post it at the moment. Maybe it was just therapeutic for me to write it and that all it was meant to be. 

Here’s the black and white of it, next week Henley will have a surgery to place a gtube that will assist in maximizing her nutrition. We have resisted this for sometime but one thing we have learned to do on this journey is make the best decisions we can for Henley on a day to day basis. Her condition is changing constantly and what’s right for her today is different than what was right for her a month ago. To avoid being under anesthesia twice in one week we canceled her bone marrow biopsy that was scheduled for today and it will be done at the same time as the tube.

There are risks with this surgery due to her decreased blood counts on all three lines. Our church will activate a prayer chain when surgery begins Friday morning, the 29th, at 7:30am. We’d greatly appreciate your thoughts and prayers during that time as well. She will stay in the hospital for several days.

We are wishing you all a very Merry Christmas and are so grateful for your prayers and love as we have been going through this challenging time. 

Preparing for our December Trip

We've been trying to find the right dosing for Henley and her GCSF shots since we were in Minneapolis a month ago. This has meant lab work three times a week to check counts. It's been exhausting. Sadly, we haven't perfected it yet. Today's latest counts are still low. I give her shots every other day now at home and we are still dipping into severely neutropenic ranges. This makes her extremely vulnerable to infection.

In addition to issues with her white cells (specifically neutrophils), her third line of blood is failing. I think I have explained before, but for those unfamiliar I will give you a little overview. Our bodies have three lines of blood: white cells, red cells and platelets. All are made by our bone marrow. Transplant is typically recommended when two lines of blood are failing. For Henley this has been the case since she was diagnosed with SDS. She has required blood transfusions for her red cells and shots of GCSF for her white cells. Consistently now for over a month her platelets have been below normal range. Normal is 150 to 400 and today Henley's platelets are 96. Platelets can also be transfused, but they will wait until her numbers are lower before doing that. On a bright note her body has been maintaining her red cells for nearly 10 weeks!

These changes in her blood encourage us to do another bone marrow biopsy as soon as possible. That will take place on Wednesday, December 20th at the University of MN Masonic Children's Hospital in Minneapolis.

Schwachman Diamond Syndrome is a bone marrow failure syndrome, meaning her marrow is unable to do the job it was built to do. You can't group all SDS patients into the same exact group, as the syndrome has a large spectrum. We knew Henley's marrow was failing from the beginning, we just didn't really expect her platelets to begin failing as well.

Henley and Jess will head out Sunday. We have appointments in Sioux Falls, SD to see a new GI, then onto Minneapolis for appointments Tuesday and Wednesday.

We thank God that Henley has not shown signs of infection during this last month of trying to perfect medication. We ask that He will continue to protect her and that we will have safe traveling weather for the upcoming week.

November Trip to Minneapolis -- LOTS of Updates

What a whirlwind trip again! It’s been incredibly helpful to have Kyle along to do driving while I sit in the backseat, entertain Henley, catch up on sleep… and write this update!

SO here are the updates! There’s a lot of them and I will try to keep to the point and not get too long winded.

First, red cells are hanging in there. We are 7 weeks’ post transfusion and they are sitting right at the low end of normal, trending down slowly. We are really hoping to make it another 3 weeks or so before needing her 4^th transfusion. Bloodwork will continue to be monitored weekly and we’ll also watch at home for any symptoms that indicate she’s dropped.

Second, neutrophils have dropped to dangerously low levels again. She has likely just outgrown her medication dose – so it was increased and we will recheck Thursday morning to see if there’s been a good response.

Third, we have chosen to do transplant in MN instead of Boston. This has been a difficult decision for us, but we have met with both teams, evaluated everything and feel comfortable with our choice.

Fourth, Henley gets to start eating solid foods! Most infants would start with rice cereal or vegetable and fruit purees – but not our special girl, she’s gonna start with steak! Lol!!! We met with her dietician today and will go forward with her recommendation. To optimize her nutrition, she will get small amounts of pureed meat with olive oil or avocado oil during the day, along with her breastfeeds.

Fifth (gosh lots to tell huh!), Henley will be undergoing another bone marrow biopsy, likely in December around Christmas. It’s important to watch her marrow closely and evaluate whether there are any changes that would indicate we need to proceed more quickly to transplant. That biopsy will be done at the University of MN.

Finally, a very encouraging piece of news – a perfectly matched donor has been identified for Henley – BUT—and that word is very important. BUT, we don’t know for certain that he would be available or would go through with donation. Henley’s doctor wants his actual marrow, this means he would be under anesthesia while his marrow is extracted from his bone.

Choosing and securing a donor is a complicated process, but I’ll try to summarize what was explained to us today. What we know is that a 22-year-old male has been chosen by Henley’s doctor. He is a perfect match, right down to blood type. We know that he was contacted and agreed to go in for additional testing which helped further show he is a match for Henley. Here’s where it becomes complicated…. We don’t have a transplant date yet and are trying to delay so that Henley can be as big and strong as possible when she enters transplant. Since we don’t have a transplant date, we can’t HOLD or SECURE this particular donor. We can’t even ask him if he would be available because we don’t know if we will need him next month, three months from now or six months from now. Two months ago when we met with transplant things looked different than they do today, transplant seemed likely this winter. We still know transplant is in the very near future, meaning it’s still something we will do within months, not years.

NOW we want to ask you to continue to help us. Our mission to grow the registry has not changed. Our request for people swab and join the registry has not changed with the news about a promising match for Henley. It won’t ever change. Not even after transplant because there will always be a special someone, like Henley, that is out there waiting for their hero. Our little friend Roman (a 3-year-old with SDS in Texas) is one of those special people. He and his family have spent his whole life looking for a match. So please don’t stop sharing information about Be The Match and bone marrow donation. It’s a wonderful gift of hope and life that YOU might be called to give someday!

** I will ad some photos once we get home and on wifi instead of the data from my phone ;) 

Big and Shiny!

I realize I haven't been writing on the blog as much - we haven't really had any big updates, so I usually make a post with a picture or two on Facebook and end up neglecting the blog due to time constraints. 

One big piece of news that I want to share is that we are so grateful to the over 1400 people have been inspired to join the bone marrow registry because of Henley. That fills our heart with so much joy because we there are others that are waiting for their perfect match and we're hopeful t
heir wait will be no longer. We have encouraged people who are outside the age range to share the link with younger people they know who might be able to join. SO don't be discouraged - EVERYONE can help. We'd also like to encourage people to donate blood, because there are three people who donated and because of them - they saved Henley's life when she needed her blood transfusions.

https://join.bethematch.org/HealingHenley

Everyday is bright and sunny with this little peanut. 🌞 On November 27 & 28 we will return to University of MN Masonic Children's Hospital to meet with several of her providers, including Bone Marrow Transplant. We have gotten lots of questions about whether a match has been identified for Henley and we're hoping to learn more during that appointment.

Milestones... Henley is moving around like crazy! She can get herself into the sit position from lying on her back and she babbles like crazy.

Never Stop Learning

Never Stop Learning - it's a great philosophy to use in life and we are learning to apply it everyday to our journey with Henley. 

Boston was very educational, despite how prepared and knowledgeable we think we are about SDS. Their doctors were wonderful and impressive. The trip really surpassed our expectations. There were several pieces of information we felt were extremely valuable and made the trip very worthwhile. One of those was learning that only low resolution HLA testing has been completed on Henley thus far. We thought that in order to do the high resolution testing, a large blood draw was necessary. We learned that isn't true. A swab can still produce high resolution test results - so we did that! Kyle and I were also tested, which had not previously been done.

Boston is on the same page as Minnesota - in terms of timeline to transplant. We are still thinking in the next 3 to 6 months it will be appropriate and necessary to move forward if a match can be identified. What Kyle and I are unsure about is, where we will do transplant. There are some factors about Boston and their expertise in SDS that make that location very appealing. This is something that we will continue to pray about and think about as we try to make the best decision for Henley and our family.

Kyle and I made time to go out for a nice quiet supper - Henley was kind enough to sleep through the whole thing. We went before the supper rush, plus it was a Monday night - so the place was fairly quiet. It was so nice to have a date night.

Henley's milestones - she's hit the 1 percentile for growth!!! She loves to play peak a boo and stand on her head in downward dog position. She is so mobile! Scooting around everywhere. It makes a person crazy when they are constantly concerned about germs!

Monday Henley will have her blood levels checked, it's amazing to think we are almost 1 month from her last transfusion again! We are so grateful. We will also do a weight check with her pediatrician. Her GI meds have been adjusted and we are hoping to have some greater numbers on the scale!

Boston and Bone Marrow

We are so grateful to have an Angel Flight lined up to take us to Boston next week. We are taking Henley to Dana Farber Cancer Institute at Boston Children's Hospital to see a group of doctors that specialize in bone marrow failure and are very knowledgable about Shwachman-Diamond Syndrome. 

The University of MN has recommended that we move forward with a bone marrow transplant in the next few months with Henley. We have been praying for Henley to be healed, and this is a way to heal the problems with her blood. A successful bone marrow transplant will give her new bloodlines. She would no longer need blood transfusions or injections of GCSF. Sometime in the next week I will try to make a post on the blog that will describe more about what will happen when we move to do transplant. Life is so hectic and busy being at home that it is really difficult to find time to sit down and write. I have so many things to share, but little time to express them.  

In the meantime, we will continue to be very protective of Henley. Please be understanding and respectful of our boundaries with her. We need to protect her from getting sick, as she needs to be as strong and big as possible going into transplant. With cold and flu season upon us, we will avoid public places and group gatherings in every instance we can. 

We continue to be so grateful for those who have supported us and surrounded us with positivity. God has answered our prayers and is helping Henley build an Army. 

http://www.shimamuralab.org

Actively Searching - WE NEED YOU!

Yesterday we learned that neither of Henley's sisters are a HLA (bone marrow) match for her. This means the official search for an unrelated donor for Henley has begun. An ideal match will be something between the ages of 18 and 44, there are also some health requirements. Please check out her link. If you are outside of this age group, YOU can still help!! You can share her story and help raise awareness about bone marrow donation. We truly believe that is just as valuable as being swabbed.

https://join.bethematch.org/HealingHenley

Almost 4 Months Old!

We are just a few days from Henley officially turning 4 months old. She fills our days with lots of smiles and is just on the cusp of full out laughter. For being such a tiny person, not even 10 lbs yet, she has the biggest personality we've ever seen in such a little package.

Last week her red blood cells continued to trend down. Unlike other checks that seem to go up and down, we have now had four tests that have all showed numbers going down. All that said, she is still in a safe zone and doesn't need another transfusion as of yet.

Her neutrophils have been nicely elevated with the help of two shots of neupogen each week. My practice poking horses and cows has served me well, so it's really a piece of cake to draw up a little medicine and give Henley a quick poke. She's such a tough girl that she hasn't even cried the last two times! Neupogen has been a huge blessing to us, elevating her neutrophils to a safe level so she is not quite as susceptible to infections. All that said, God really watched out for her prior to diagnosis because I was trotting around outside, through the barn, handling horses and letting them nuzzle her and toting her around the countryside without a single thought. All things that exposed her to bacteria and germs that could have been deadly with a neutrophil count of zero!

Tomorrow the community of New England is hosting a benefit for Henley. Due to weather concerns the meal and silent auction have been moved indoors. The outpouring of support that we have experienced is overwhelming. Henley is truly loved by so many people - young and old, near and far. We are forever blessed and can't thank you all enough. We have been especially touched by the young people of New England, elementary school kids hosting a bake sale for Henley and a story from a father who witnessed his young son praying before bed. When the Dad asked him if he was saying his bedtime prayers, the son answered that he was saying his prayers for Henley Johnson.

Bone Marrow Transplant

I wanted to take a few minutes to write this morning and share some information/clarification on bone marrow transplant and blood donation/transfusion for Henley.

Thank you to everyone who has offered to donate blood for Henley's transfusions. Unfortunately, the way it has been explained to us, the doctors aren't able to accept blood donated specifically for Henley. There are two reasons for this, first we don't know when Henley will need her next transfusion. We continue to check her levels twice weekly and this will be decreased if she continues to remain somewhat stable. There have been times where we feel certain we'll be heading to get another transfusion by next week, but then with the next labs she bumped up again. This is very typical for bone marrow failure. Think of something that only works part time, some days it's good about doing it's job and other days it's not. Sometimes her red cells are mostly good ones and other times they are smaller and more fragile and don't last as long. The second reason is because it takes several days to fully screen and process blood for a donation (at least as it has been explained to me). Even though it's someone we know, or even Kyle or I - there is a preparation process that needs to occur and when it does come time for a transfusion we won't be able to wait for that process to take place.

Next, the bone marrow transplant. Henley will need a bone marrow transplant in the future, but as of today, we don't know exactly when. We do have a consult scheduled with the bone marrow transplant specialist in two weeks and will know more about that process then. At this point we have been told that when Henley consistently has two lines of blood failing, we will move forward with transplant.

So what does that mean you might ask? Our blood has three lines: red cells, white cells and platelets. Henley's platelets have been perfectly normal this entire time, but her white cells, specifically neutrophils have been non-existent until we started using medication and her red cells have also been failing (they have been assisted with transfusion). So at this point it does seem likely that we will be heading towards transplant sooner than later.

Who will be the match?? The doctors told us we will first test the twins, that will be done this week with a simple swab test. It would be great if one of them was a match for her. If they are not a match we will explore finding her a match through a donor search or possibly a cord blood bank.

We are asking people to participate in being tested at the benefit that will be taking place in New England. It's a simple swab of the inside of you cheek and it is then sent to www.bethematch.com for testing. Our journey with Henley has really opened our eyes to how many people out there are waiting for a match and maybe YOU will be that person to save a life!

We want Henley's experience to help others because so many people are helping her. So if you have thought, how can I help Henley, please donate blood and please be tested to BE THE MATCH! Even if that donation isn't specifically used for Henley, you know it will be used to help someone in need!

STRONG!

Henley is really doing good! She seems to be maintaining an appropriate neutrophil count with the help of twice weekly shots of GNSF that we give her at home. We're still doing twice weekly lab visits, but so far have been able to do those from our home clinic and then consult with her doctors over the phone about the results. Although her red cells have gone up and down, they haven't dipped low enough to warrant another transfusion!

Last week we all traveled to the University of Minnesota to meet with a genetics counselor and check in with Henley's doctor. The twins were also tested during this visit to see if they are carriers or possibly also have SDS. There is a large spectrum when looking at patients that have SDS and although we don't think they do, we want to make sure.

Henley seems to be growing and developing normally in terms of strength and cognitive abilities. Next week she will be evaluated during an in home visit with some specialists. She isn't even four months old yet and she's strong as can be, rolling over and pushing herself up!

Some very generous women in our small community are planning a benefit for Henley. A flyer below gives some information about the event. They are also selling HEALING HENLEY bracelets.

Leah Rustan made the following post on Facebook:

For anyone wanting to purchase a Healing Henley wristband that is not local to the New England area...Cost is $5.00 per wristband. Checks can be made out to Kyle, Jess, or Henley Johnson. All profits will be given directly to the family. I will mail wristbands to the return address on the envelope unless otherwise noted. Please send payment to:  

Leah Rustan

1014 4th Ave W

Dickinson, ND 58601

Thanks so much for your support! Feel free to message me with any questions on getting your wristband 

Being Home

As you can see from this picture I really have my hands full. Thankfully my parents are here helping with the twins, because there is no way I could manage them alone right now with Henley while Kyle is at work. So here's an update about what we've been doing! 

The twins were thrilled to see Henley. I think more happy about her being home than about me being home! All we hear from them is HENNY HENNY HENNY... Henny cry! Henny poop! Henny eat.... etc. 

Saturday Kyle and I went car shopping. The idea of driving the 1 ton long box back and forth to Minneapolis is just not realistic. I am fairly certain, although we haven't tried it yet, the big truck would not fit in the parking ramp at the U. With the help of selling a few horses last week, we were able to buy a nice used Ford Taurus that previously belonged to an 82 year old lady. All three car seats fit in the back and it has a big trunk, so we're set. 

Henley was surrounded by family and friends on Sunday at Our Redeemers Lutheran Church, where she was welcomed into the church and baptized. (I'll post some pictures on the blog) We had a small family luncheon afterwards at our house. 

Monday we did labwork in Dickinson. When the results showed up on mychart, I just called one of her doctors in Minneapolis and consulted over the phone. We were thrilled to see her red cells up, but as expected her neutrophils had dropped again. Arrangements were made to get the medication to Dickinson so she could have another shot to boost those numbers into a safer zone today. We will now get the medication and give Henley the shots ourselves as needed (likely 1 or 2 times a week). Her next blood check is Friday.

As long as things continue to go well she does not need to be seen in Minneapolis until next week. This could of course change at anytime... so I just drive around with the car packed and ready to go for now. 

One other thing I did today was register Henley with the Shwachman Diamond Syndrome Registry. I've been doing a lot of research at night trying to collect more information and here are a few interesting numbers. There are 154 SDS patients "pinned" on our support group's map (of the world). As of July 2017, there are only 192 SDS patients registered with the SDS Registry. 

Trusting in Him

We got our hopes up a little bit too high... blood work today showed that Henley just is not stable enough to move home to SW North Dakota, not even for a short time. She was started on neupogen today. It's a shot that we give her. It's unknown how frequently she will need these shots, every day, every other day, once a week... we just don't know. Her blood work will be checked again on Wednesday and we will re evaluate then. 

We also learned information from her skeletal survey (a full body X-ray). The results show that she has many of the markers typically seen in patients with Shwachman Diamond Syndrome. Most notably are where her femurs and hips attach. At some point in the future she will need surgery to correct this and help her walk normally without pain. 

In some ways today was harder than the day she was officially diagnosed. I think it was harder for me, because I was so looking forward to going home, seeing the twins and being in our house, on our quiet dead end road. I know it was hard for Kyle to head home, once again without Henley and I. All we want more than anything right now is to have our happy little family of 5 under one roof. Please pray God will give us that soon. We are trusting in Him.

Diagnosis Day

We have an answer… today we learned that Henley has a genetic disorder called Shwachman-Diamond Syndrome. It is very rare and characterized by exocrine pancreatic insufficiency, bone marrow dysfunction and skeletal abnormalities. There is no cure, but we will be doing everything we can for Henley. One of those things started today with enzyme therapy. A new normal for her will be a tiny teaspoon of applesauce with enzymes sprinkled on top before every meal. This will help her body properly absorb nutrients and grow. 

We met additional doctors today that will be a part of her care team. We are scheduled to go back on Monday for some more blood work. Hopefully we will get the ok to sneak home for a few days. 

Our need for prayer will continue. Prayers that Henley stays as healthy as she can be. Prayers that God gives Kyle and I strength for this new journey and prayers for comfort. God gave us Henley. He trusted us with her and knew that Kyle and I would have the strength to go through this storm. We are so thankful for the blessing that she is to us and the lessons that she is teaching us.

"I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone

It is well with my soul

It is well, it is well with my soul"

https://www.youtube.com/watch?v=B6fA35Ved-Y

Angels Everywhere

an·gel

ˈānjəl/

noun

1. 1. 

   a spiritual being believed to act as an attendant, agent, or messenger of God, conventionally represented in human form with wings and a long robe.

   
   

   "God sent an angel to talk to Gideon"

   • 
     

     
     

     
     
   • 
     
2. 2. 

   a person of exemplary conduct or virtue.

There are angels everywhere. We pass them everyday and sadly, for the most part they go completely unnoticed and unappreciated until you really need them. If you are reading this, you have been one of our angels. You have prayed for us, thought of us while you went about your daily routine, mailed us cards, sent us messages, cooked for us and called to simply say "Hi!" Each of you have helped provide us strength, energy and given us comfort during this journey and we will forever be grateful for that. You have all inspired Kyle and I to be better, to give more and to go the extra step. I want to take a minute and tell you about two particular angels.

After we left the hospital and Kyle went home, Henley and I were left to make the most out of being left in Minneapolis. We didn't come to the cities with all our "baby stuff" from home, so I decided to look online for a few creature comforts. Our friend Cassandra from Iowa had brought us a co-sleeper and a ring sling to use. I thought if I could find a stroller and maybe a baby swing of some sort to use I would be set.

Since birth Henley has really disliked being anywhere other than my arms. That meant she wasn't thrilled about our baby swing, but when we were at Children's Hospital in Minneapolis we had the opportunity to use a Mammaroo. She wasn't in love with it, but she was far more content in it than anything else we had tried.

There were a number of them for sale on Facebook marketplace, but the average price for them was around $150, used. I found one nearby and sent the seller a message, making him an offer. A few minutes later he messaged me back and said he and his wife read Henley's story and wanted to give it to us. I was speechless. I didn't know what to say. Shortly after that, I received a message from his wife, full of love and support and asking what other baby items Henley needed and what personal items I might need. When we met that evening to make the exchange, not only had they brought the mammaroo, but they also brought a bag full of items they had just bought for Henley. Some baby books, toys and fuzzy blanket. I was in tears. I didn't know how to accept such generosity. We sat and visited for awhile and just talked about normal things. It was so refreshing.

A week later they invited me over for supper and while Ben cooked, Nicole and I went for a walk with our babies. The conversation and great laughs made me feel like we had all been friends for years.

By now you're probably thinking - Wow! What special people, to go above and beyond for a complete stranger...  but I'm not done yet. Nicole saw a picture I posted on Facebook of Henley and I. I truly looked like a new, tired but elated "fresh" mom. I said I loved the picture regardless of how I looked, because it was likely the only non-selfie, mommy and me picture I have of Henley and I. So what did Nicole do? She shared our story with another set of angels and a week later a special photo shoot and priceless photos were gifted to us.

God has heard our prayers and He has sent us angels. Each of you have arrived at just the moment we needed you. You have each inspired us, lifted our spirits, lightened our load, nourished us and brightened our day. He has also given us time. Time to meditate about our lives, what we are doing or not doing and think about who we want to be and how we can use the gifts he has given us. With His help, our tiny Henley is taking us on a journey to be difference makers. Thank you for being a difference maker in our life.

 

Almost 9 lbs

We had our Monday appointment yesterday. The positives are that she gained weight again! She's ALMOST 9 lbs!! Her hemoglobin went up just slightly, but is still far from normal. Her white blood cell count has gone down again and her neutrophils are still at zero. Her energy level and disposition are good, so we can smile about that! We are still waiting for the diagnostics tests to come back. To be honest, I have quit asking and just trust that as soon as the doctors know something they will tell us. I'm thinking about one day at a time and that is the easiest way to cope. My focus is knowing that she is happy and as normal as can be on a daily basis. I'll focus on the other stuff later, for now I'm enjoying my baby and living in a world where she is perfectly healthy.

Ebb and Flow

The ebb and flow of this journey continues. We were feeling pretty optimistic on Monday that Henley had stabilized enough to consider transferring her follow up care to Bismarck or Fargo. This would include continued blood work and weight checks twice a week, while we wait for the genetic tests to come back. On Tuesday, Henley didn't have her usual energy and didn't eat as well. Wednesday's blood worked revealed her hemoglobin has dropped again, so it's possible she may need a transfusion this weekend. I have a great app on my phone that helps me track her eating, activity, sleeping and diaper changes. Looking at the patient in combination with the numbers has been an important key to determining when we will do a blood transfusion. Wednesday and this morning (Thursday) her energy has been much better, active and smiling and cooing. The Henley we love to see!

I've been doing pretty good at patiently waiting for the genetic tests, but with today's decline - I'm feeling really anxious again and praying the lab will get us some more answers by Monday so we have a clear direction.

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