Last night, I was excited to show Naomi the Merida wig and bow and arrow we got her for Halloween. Having watched brave more than 15 time a now, I thought it was fitting for her. So, it was hard when Naomi said she hoped to be HOME for Halloween. She also remarked at how much she loves her blonde hair and did not want to cover it up. We took a walk to the window at the edge of the hallway that looks out towards home. This has become an almost nightly routine. There we stood as I cuddled her and listened to her be upset by the progression of things and her still being here. I was her rock as she looked out the window last night while leaning on me and remarking at how much she wishes she were out there rather than in here. We then walked down to the second floor to watch the fish tank for a while. The second floor is where surgeries happen. So we avoid that area during the day. Last night was the first time we ventured down there because we needed a change of scenery. When preparing for sleep, she really wanted me in her bed. It was the first night in over a week that I was able to sleep with her. She was tossing and turning so much the past week with her sinus issues that I was in then way way and her moaning would keep waking me and my shifting would wake her.

So, all this did not set me up well for a good morning. Her hematologist came in and made it clear that the only thing keeping us here is her diet, or lack thereof. The surgeon has kept her on clear liquids and broth for 5 days now. How much broth, jello and freeze pops can a kid consume? She is sick of it. Not used to a sweet diet, she told me this morning that she wants FOOD not sweets. I cannot blame her!

I think I could plan better for 3-6 months of being in CA for a transplant if I were at home right now, myself. I miss my babies. I see pictures of Caity and Niamh and am thankful I can see them, but want to hold them. Still nursing Caity, I am sick of pumping. I was home with the older children a bit on Tuesday and did lessons in person with them and really enjoyed their company. The boys have matured so much during this short time. Lauryn has stepped up and takes care of laundry, her sisters, etc. while my husband juggles work, meals, dishes, errands, shuttling kids, etc.

Her blood counts remain stable and consistent, with no improvement today. The hematologist said that it is okay to be boring right now. Well, I am not so sure things are boring. Today has been hard.

Well, her labs improved, but I am starting to think it really does not matter. It seems that if one of our children is a match, we will proceed with a BMT since her recovery is so slow. The doctor stressed this morning that she is still severely neutropenic and while discussing the possibility of going home within a few weeks, it was made clear that her visit home would be a temporary stop before we proceed to CA for a transplant. I am trying to stay optimistic and see that moving on with a transplant sooner can be a good thing so this is not dragging on and recovery can happen sooner. The results for the donor HLA tests for the other children are not expected back until next Monday. That will dictate much as far as which path we take next. A BMT is most successful with a sibling match. So, it seems that really would be best, I think. There is also the fact that recovery with ATG is not always permanent and can result in a relapse. A BMT is the cure. Good thing this is all out my control.

On Wednesday, she made RBCs on her own. They increased from 2.88 to 3.14. Hemoglobin from 8.8 to 9.4 and hematocrit from 25.4 to 27.4 also improved on her own. She received a transfusion of platelets last night, so it is hard to know it the huge jump overnight was her and the transfusion or just the transfusion. We should see that better tomorrow.

Her WBCs jumped from 2.4 to 3.2 and she still has 2% neutrophils. So, her ANC is 64 today. That is a good jump from 48 yesterday and 24 the day before. Hopefully, we keep trending upwards like this….

She slept well again and all her physicians agree she is recovering well, just slowly on account of not having WBCs. And then there is still the issue that as she makes WBCs, they are likely going to infections in the body and we are not seeing them in the blood tests. So, does anyone REALLY know what her levels truly are? Certainly not.

Last night was Micayah’s night to sleep here. We made it to Mass here at the chapel today. That was a nice break from the room. We really like the priest on staff here. Getting her to do lessons is a challenge, but we have managed to do it two days in a row now. Laying in bed watching movies or playing games is way more interesting to her!  I am not above bribery and jello and freeze pops are a great reward. Speaking of which, we are trying to increase her “clear liquid” intake. They will not reduce the bag of IV nutrients until she is eating more. But she is not really interested in eating much on account of the bag making her have to use the bathroom so often. It is a tough road we are on, for sure.

Yesterday, her WBCs took a plunge and her platelets did, too. But since her intestinal bleeding stopped, we put off a platelet transfusion.  Last night was wonderful since she slept about 14 hours waking only twice to use the bathroom and then going right back to sleep! Then, today her platelets dropped way less which means she made some AND she MADE red blood cells on her own and her hemoglobin and hematocrit levels increased, too!  That is all very exciting.  Her white bloods cells are fluctuating day-to-day, but her lymphs are dropping over the long term, which is ultimately what we need. And she is trending is such a way that we see she is starting to make neutrophils but the levels fluctuate greatly daily and are still way low.

Today she did lessons for the first time in weeks! She did math, religious ed, writing, and spelling. That is huge progress. Thank you, Graciela!  Dear Mrs. Guthrie stayed with Naomi for a few hours allowing me to go home and help Micayah and Lauryn with some lessons.

Naomi’s morale is pretty good. She had her dressing on the PICC line changed today (every Tuesday that happens) and said that “it was not as bad as last week.”  She continues to “eat” broth and “drink” juices. In fact, today she pretty well chugged her liquids. Yay for that!

I have been back and forth between hospital and home over this weekend. I was able to attend Mass for the first time in about a month. It was a great way to spend the afternoon with the children. I slept at home with the kids both Friday and Saturday nights. Tomorrow, Aaron will have to return to the office practically full time. So, our kids will be shuffled between neighbors and friends throughout the week while I manage their homeschooling via email, text, and phone.

It breaks my heart that after so many years of them being with one of us full time, they have to go be with others. I am thankful for the friends who have offered their home to our children though, especially like-minded friends with values like us and homeschoolers or sweet neighbors willing to help and support us while we continue with our educational choices. I look forward to this season being over, Naomi being healed, and life taking on a new normal. But for now, we press on through chaotic days and separated times. Today marks two weeks since Aaron and I have been home together and in that time, we have had the children all together for less than 6 hours total.

Beginning tomorrow, her dr will be contacting the lab daily to determine if we have a donor match among the children. We continue to plan for a transplant. Research shows that if there is a sibling match and the AA patient is a child, there is more long term success with a transplant. Her immunosuppressant protocol could lead to relapse and eventual need for a transplant in the future and at a later age, a transplant can be more difficult. Being as severely neutropenic as she is, she would need a miraculous recovery and fast to stop her transfusions and be able to put a transplant off. Believe me when I say that I prayed hard for a miraculous recovery today.

Her WBCs fell again today to 1.6. Her dr is still happy with her counts, especially since the RBCs are dropping less rapidly. She received platelets on Saturday night and so her intestinal bleeding slowed today and so her RBC levels reflected that. Her ANC level was lower today because she lost those bands. She did retain her segs. But she also had monos appear. Monos do not count towards her ANC count, but they do reduce her risk for infection. We will take whatever we can get at this point.

The best news this weekend is that she was permitted ice chips beginning Friday. Then, today, she was ordered to be allowed fluids and broths. I had chicken broth brewing at home and strained some and took it in to her immediately. Tonight, I have beef broth starting for her. We are so excited that she can begin to reintroduce food to her stomach.

Her spirits are really good. She was wanting to press the call button last night and then tell the nurse, “oh, forget it. We took care of it already.” She is obviously getting bored! Today, she was tickling Aaron and being mischievous with him. That is my girl! So, I am taking school work along to the hospital tonight and tomorrow we are going to attempt to do a few subjects of lessons. We will start with reading, spelling, grammar, math and CCD. Just a few minutes of each to break her back into a learning routine. I think it will help the days to go more quickly, too.

Today is October 27, 2013. Today marks the one month anniversary of her diagnosis, the insertion of her PICC line and her first dose of ATG.  It seems like it has been so much longer than a month. It feels like the longest month of my life. In the past 34 nights, she has been in the hospital for 23 of them. As we head into another week and the second month of this journey, the reality is hitting that things are getting more difficult for our family.  We have decided that her transplant will take place at City of Hope in Duarte, CA. At some point, she and I (and her sibling donor?) will be air flighted there and Aaron will stay behind with the rest of the children and visit us sometimes.

My prayer is for the path to be clear for us. If her counts continue to be as low as they are, and transfusions as often as they’ve been, we will know that she needs the transplant. However, if she is blessed with a miraculous recovery and transfusions become unnecessary, then we may be able to put off a transplant and see if full recovery on ATG and cyclosporine is possible. With one month down, we would expect her to be transfusion free within two more months.  Just in time for Christmas…..

I mentioned that we had rounded the corner and were headed up another hill. It is the hill of sleeplessness. Whether caused by sinus congestion, a reaction to a med, post traumatic stress disorder or a combination of all of the above, we are all more than a little spent these days.

To see Naomi awake, one is sure she is improving. Her swelling is greatly reduced, she laughs and plays games and colors in bed, she walks without owies or favoring her side.  But to sleep in the same room with her, you would think the opposite. She moans and whines and cries almost non-stop. She gasps for air and sits up straight and fast because she cannot breathe. She alternates between reliving her pain from the surgery and fighting with her sisters. Poor Niamh is nowhere close and yet to blame for a whole lot! Little Caitriona is constantly being told to “stop it.”  I am sure there is humor in there somewhere, but to sleep-deprived parents who are watching her like this every night, it is taxing to the mind and body. How does she wake with such a smile on her face and the ability to say that she slept well and has no pain?

Aaron and I have brainstormed some ideas and found that a med was introduced on the 18th and these nights started on the 20th. Respectful of our wishes and the fact that we found nightmares, hallucinations, congestion and constricted airways all on the side effects list for this med, her dr today took her off of it. Goodbye micafungin! And good riddance, too. Already tonight, I am seeing a difference. She is sleeping peacefully on and off with occasional bursts of snorting or fighting with those troublesome sisters. We also have her on FloNase, a sudafed-like decongestant and saline drops. Oh, how she hates these things going up her nose. A catscan (that now makes three in the past 10 days) showed that her sinuses are congested (duh!) but not blocked (whew!) and structurally, great “with the ENT saying that he sees no reason to perform any surgery on her.”  Well, in my tired and pessimistic mood tonight, I am thrilled for that. I was almost sure that anyone brought into the circle of referring physicians would have some surgery to offer to fix her woes and then a list of medications to prescribe, too.

After a meeting with her oncologist/hematologist tonight, I do have renewed faith in her team. There are rays of light shining through. These dark clouds just need to clear. The darkest clouds being her abdomen being slow to heal and the bleeding she is experiencing from it and her restless sleep. Those are the areas in which she (and we) needs prayer.

The best news of the month is what I will close with tonight. Her neutrophil count DOUBLED overnight. For those of you who do not want technical data, you can stop and celebrate here.

But as a math and anatomy lesson for all my fellow homeschoolers (and anyone else interested, too)…..

The ANC count is something we follow very closely because it gives us an estimate of the amount of infection fighting cells in her blood and how at-risk she is for infections. This is her absolute neutrophil count. Neutrophils are the white blood cells that fight infection caused by bacteria and fungi. To compute the ANC, we take the percentage of segmented neutrophils plus the percentage of bands neutrophils and multiple that total by the white blood cell count. Then, we multiply that total by 10. This gives us the approximate amount of neutrophils per microliter. Normal ANC is 1500. To be severely neutropenic and at serious risk for infection is to be at or below 500.

So, to show you with some of her actual labs….
10/16/13                10/22/13            10/26/13
WBC             2.1                 2.2                       1.8
segs               0                     1                          2
bands               0                   0                          2
lymphs             98                99                        95
monos               2                  0                          0

The segs, bands, lymphs, and monos add up to 100. Those values are a percentage of the WBC value. So for the 16th, we take (0+0)*2.1*10=0. She had an ANC of 0.
For the 22nd, we take (1+0)*2.2*10= 22. She had approx 22 neutrophils per microliter. Still way below the 500 mark for getting out of severely neutropenic.
For the 26th, we take (2+2)*1.8*10= 72. She had an ANC of 72. This is her highest since September 23, when she was admitted and tests started to diagnose her.

Ideally, the different cell types should fall within these ranges. Naomi is very high in lymphocytes and very low in all the rest.

• Neutrophils: 40% to 60%
• Lymphocytes: 20% to 40%
• Monocytes: 2% to 8%
• Eosinophils: 1% to 4%
• Basophils: 0.5% to 1%
• Band (young neutrophil): 0% to 3%

Naomi had a decent night of sleep! She slept through the night fairly well and woke with the swelling in her face reduced significantly.  She did continue to have nightmares and sit up in her sleep, but this morning she said she felt like she slept well and did not remember dreaming. She also confirmed that her belly does not hurt. i am sure the nurses did not believe me that her pain was just a nightmare and they seemed ready to go get her pain meds.

she is already coloring with Micayah who is my hero of the day. He slept with her last night and let me sleep 5 hours straight! It really is a shame that hospital policy prohibits me from being able to leave him here with her because he handles her so well and wants to help. He helped her to the bathroom a few times last night, soothed her when she had nightmares, and never left her side.

The gastroenterologist who designed her food-in-a-bag was in this morning and reaffirmed what the surgeon said last night – that we are on the upswing. Her abdomen is much more tender and less firm, has reduced in swelling, and he was able to touch her without even a flinch of pain. Yay! He said that hopefully the surgeon will allow her to start sipping soon. She cannot wait for that first sip of ice water!

Everyone is pretty excited that her WBC count is staying about the same and not disappearing. She still has 2% neutrophils and is still severely neutropenic, but it has not gone down either. Her RBCs are staying just about steady. There was a slight dip, but nothing critical at all. Her platelets continue to fall steadily.

Today, we will venture to the gardens again. Maybe she will walk this time since she is giggly and full of smiles from all that sleep she got last night.

Later this afternoon, Lauryn, Naomi and I took a walk to the Healing Gardens. It was worth the trip to hang out by the waterfalls, ponds and flowers for an hour and a half. When we returned to the room, Naomi got a dose of Benadryl and napped for about two and a half hours. Her sleep was the best she has had in a few days. She continues to have nightmares every time she enters deep sleep. I am trying various essential oils to help her but have not found the perfect one yet. Intune and Serenity have helped, but it think pure Frankincense is probably what I am going to need.

When’d she woke from her nap, she sat straight up and began to play with her new stuffed donkey. Thanks, Jill! He is so soft and cuddly and has a home right on the pillow next to Naomi. This evening he is really smelling like eucalyptus. 🙂

There was also some care packages that arrived. Aunt Marie, we cannot wait to paint our nails and the crafts are perfect and have already been ripped into. Also, she received some Melissa and Doug sticker books from an agent who works with Aaron. She has already made an awesome scene of a living room.

It it was great to see her with some energy tonight, laughing and playing. Micayah is here with us tonight. He has a soothing presence for both Naomi and myself. Her heart rate became lower and she was visibly more relaxed with him by her side tonight.

We are on the upswing! While Aaron and I do not really feel as though we are on an upswing, we will agree that her abdomen has improved greatly this week. We had a negative stool sample come back today. Her swelling has decreased. So, as far as the abdominal surgery and recovery is concerned, there is definite improvement.

The new battlefront appears to be her sinuses which have kept her from sleeping. Her lack of sleep has resulted in her being so exhausted that she is having restless sleep when she falls asleep. She thrashes around non-stop and relives the pain and trauma of the past 10 days. She talks about her bandages hurting although they are gone and she screams that she is thirsty. But then when she is fully awake, she denies any pain and says nothing about water. I imagine as the months go on, she is going to have more nightmares and psychological healing to do over this entire experience and it breaks my heart to even think about it. We are awaiting an ear, nose, throat specialist to see if we can give her something besides Benadryl for her sinuses. She doesn’t need dried out. She needs decongested and drainage.

Her temps continue to rise and fall.  A blood test taken on Tuesday evening was cultured and had growth today. So now we await further culturing to know what exactly it is and which antibiotics will get rid of it.

In the meantime, her WBC count dropped from 2.1 yesterday to 1.8 today. We are seeing 2% neutrophils (down from 3%) and monocytes reappeared today. I am really beginning to understand that the fight against AA is indeed a marathon. We rounded a curve and have another hill ahead…..

My prayer for the lioness is for sleep. Deep, restful sleep.

Naomi was allowed to go outside today for the first time in 10 days. She walked with Aaron to the Healing Gardens. They hung out there for about two hours. She was able to walk the whole way there by herself and a portion of the way back. While outside, her sinuses opened up and she was able to breathe so much better. Too bad that has not lasted through this evening. Her sinuses are giving her a hard time again tonight…. which is why I am writing this at 4am in between helping her blow her nose and using some oils to try to help her out. Nothing seems to work though.

Her siblings all did very well with their HLA typing blood tests today.  The only one to cry was Niamh (3). It required three of us to hold Niamh down. Poor girl. Caitriona (1) nursed during the test and seriously did not even flinch. She was amazing. Truly amazing! Micayah (12), Malakye (10)  and Lauryn (9) were all brave for their sister. Malakye was not happy that I snapped a photo. He said, “is this a blood test or a theater show?”

Naomi received a unit of blood this evening and perked up a bit after it was in her. She played some games on my iPad and spent some time with Lauryn. Her fever continues to come and go, spiking around 103.6 this evening. They did a blood culture sometime in the night Wednesday early night, around 3am, and we await those results. They did another blood culture late Wednesday evening, around 8pm, and those results will be a while coming. Every time she has a fever, they give meds to lower it and then culture her blood to see if an infection is causing it. Her doctor mentioned on Wednesday that the fever could be her white blood cells responding to the inflammation in her intestines.

Naomi has talked a lot about going home tonight. Those are the hardest conversations to have with her because we truly have no idea what the future holds for her and there is simply no mention of her being discharged. I cannot break what hope she has that she might go home soon.

Just a short post to CELEBRATE that Naomi had 3% neutrophils today!!!!!! Praise God for that! Her dr said that her fever could be reflection of those neutrophils being in the system and doing their job. She spiked at almost 103 last night.

Her hemoglobin took a drop though. So, she will be RBC transfused tonight. The good news with that, too, is that while her count decreased, it decreased less than it did the previous day.

Please keep praying for the Lioness. She needs her pride of supporters. 🙂

Naomi has been having a lot of sinus congestion at night making it almost impossible for either of us to sleep long stretches of time without waking. Her sinus issues were further aggravated by the fact that she could not get a deep breath because she was afraid to move her diaphragm to get a deep breath on account of the abdominal pains. So, nights have been fairly sleepless since we started to take her off the heavy narcotic painkillers on Saturday. Since the narcotics slow digestion down even more, we moved her to a glorified Advil on Saturday and the surgeon discouraged the use of the heavy stuff. That seems to have paid off (disregarding the three sleepiness nights we endured) because we are seeing definite signs of her digestive system moving again and for that we are very thankful. She seems to be resting much better today. She and I both took multiple naps today in between short walks and time in the rocking chair, also prescribed for helping the digestive track move and heal. I felt a little bad for Malakye today because neither Naomi nor myself were much up for playing and he became bored watching us sleep. But for the sleep, I am thankful! 

I am at home tonight and Aaron is on-duty at the hospital. It sounds as though Naomi continues to be restful. She did start to have another fever last night and so we are awaiting results of yet another blood culture to see if another infection is developing. She had a slight neutrophil count today. 2.2! Our hope always is that her bone marrow is responding to the ATG treatments and that her numbers will continue to increase. The fact that she has no mouth sores or bruising is really good. Clinically, she looks really good. Unfortunately, her abdominal swelling has not decreased yet and that is a huge prayer right now, as that swelling must decrease for her to be able to return to eating and drinking. We are seeing that her RBC and hemoglobin count is really struggling since she has been taken off food. I had been keeping those numbers up at home with green juicing and heavy broths. She had been transfusion free for over two weeks but the time is quickly approaching when she will require another red blood cell transfusion. Right now, we are pushing it because we want to minimize them due to the risk of iron overload and also the risk that her body could build up resistance to some of the proteins in other bloods making her transplant more difficult down the road. 

We we continue to plan for the bone marrow transplant, and have chosen our destination and communicated that to both the insurance company and her primary oncologist/ hematologist. We continue to hope that she has full recovery from the ATG, Neupogen and cyclosporine, but have to move forward with transplant planning since it is such a time-sensitive issue. It is so hard to tell right now whether or not the transplant will be required because her residual blood in the veins may not be showing improvement because the cells are in the tissues and organs doing their job. Furthermore, when the counts are as low as hers, there is a chance that the very small blood sample does not contain some of the very few WBCs she has circulating in her body. Only time will tell, as this intestinal issue heals. We are certainly not jumping the gun to do the transplant and could pull back at any time if it seems like recovery is happening. Most cases of ATG recovery are within 3 months. There are a few cases of it happening within 6 months. Very few cases take up to a year or more. Unfortunately, due to Naomi’s severely low WBC count, we are not at leisure to wait very long. Multiple transfusions per week of platelets and now weekly RBC transfusions can pose long-term risks. 

Please keep me in your prayers as I take Micayah, Malakye, Lauryn, Niamh and Caitriona for their HLA typing blood tests tomorrow (Wednesday). We are thankful for all your prayers and the kindness that has been heaped upon us during this journey. Your gifts continue to arrive and carry us through. We appreciate each and every thought, prayer and kind gesture. 

Today marks the second Monday that we are here. I was sure we would be back home by now. But having a plan in place is nice. Naomi enjoyed having Lauryn here for the past two days. They read together, did crafts, giggled, and fought. It was nice to see her act like a normal child. Today we went to the playroom and helped make Halloween decorations. Naomi was very ambitious with her walk and pushed herself farther than on previous days. I was very proud of her but it wiped her out and she napped for a few hours after.

She is able to move much more easily without saying “owie” with every breath. She sat up like it was nothing and was definitely moving her legs better while in bed. Previous days had been spent in a manikan like position because she was afraid to move lest it hurt more. She did not even give me a hard time about getting into the rocking chair today.

I got to go home for a few hours this evening while Mary stayed with Naomi. They had a good time together and I got to fold and put away laundry and clean my bedroom. Win/win! I am hoping we get downgraded from intermediary medical care tomorrow. I am also hoping that since we are going to be here for a while that they might move us to another area of the hospital and not keep us right beside the nurses’ station. It would be nice to have a little less traffic and noise right outside the door for the next few weeks.

Malakye is Naomi’s guest of honor tonight. They have some sort of sibling whistling call that allows them to communicate with each other without the rest of us knowing what they are talking about. As they fell asleep tonight, they were exchanges messages.  Bringing the other kids in here is definitely helping her heal. Her morale has improved and she is not showing the anger she had been or being as difficult with us throughout the day.

I meant to post this yesterday, but could not get back online last night since the iPad was set to YouTube’s dolphin healing music track and my phone does not work well for posting….. So, this is Sunday’s post.

The day started out not so well. I am learning that mornings will be difficult and doctors rounds are not always encouraging. One foot in front of the other and better today than yesterday are my mantras. With that in mind, the doctors said that we cannot really gauge her progress in terms of days but rather weeks. Will she be better next week than this week? That is the question. The doctors were all here at the same time today because they had a pow-wow in the hall to discuss Naomi and her progress. They continue to be conservative and give us worst-case scenarios. I am trying to appreciate that they do not want me to get my hopes up. I am trying to remain firm in my faith from day-to-day and remember that Naomi is right where God allows her to be. Keeping that in mind, we can make the best of whatever comes our way.

After a bad morning which took 45 minutes and a whole lot of screaming and tears to get her out of bed to use the bathroom, we managed to have a really good day. She did not need the heavy narcotic pain meds throughout the day and was lowered to a lesser prescription. She also never took a nap and did not run a fever throughout the day. Yesterday was the first day her temps dropped back into the 98s for any amount of time. Today, they remained there for most of the day. That is definitely progress. Though they are beginning to climb this evening.

As as for her activity, bribes are working great. She takes walks to the playroom for stickers and games. She walks to the window at the end of the hallway to have the sun shine in on her.  She was out of the bed more than in it today, and that is such a relief to see! As long as she walks each day I will allow her to choose something that she really likes to do in the evening. Last night, she did get her nails painted, aqua and lavender, alternating one then the other.  Tonight, she wants us to draw on her with henna. 🙂

Never underestimate the power of sibling bonds. Naomi has been playing with Lauryn all day and it is definitely showing in her mood and vitals. Her heart rate was lower today, blood pressure, too, and she laughed and had a really good time – she did not even complain that laughing was hurting her belly!

Tonight is family movie night and Aaron should be arriving with the other children soon. We also put together a schedule for the upcoming week(s) so that Naomi always has someone with her, Aaron can get his work done from home most days, or someone is helping us so all the children are taken care of while he is at the office. It is going to be a crazy life for sure. But she is improving and time will see us through this. We are eternally grateful to the dear friends of ours who have graciously stepped in to help since our family is so far away. There are so many of you who have opened your hearts and homes to us and we are thankful for you.

I wanted to to end today’s journal with some moments that I want to forever remember….
She has reverted to watching episodes of Blues Clues which was our favorite show together when she was a toddler. Blue is our mascot through this ordeal. Thankfully, the playroom has Blue stickers and each time we go there, she chooses a new one. And with Amazon Prime, we have plenty of episodes to last us a few weeks.
She has a good attitude about my needing to eat while she cannot. It began when Lauryn was eating in the bathroom and Naomi said that she wanted the company of her sister and did not mind if Lauryn ate in front of her. Later, I made a “kitchen” in the corner of the room where we were hidden from her while eating but could still be in the room. Naomi joked that she does not mind if we eat in the room with her “because she gets to eat in her sleep.” A few more times throughout the day she has joked that she eats ALL DAY LONG and even in her sleep! What strikes me the most is that I look outside at the desert and the mountains and feel totally helpless and useless. My child is enduring excruciating pain and there is nothing I can do for her. And yet, all she wants is my presence. Never estimate the strength of a mother’s presence. Sometimes, being there through the most difficult moments is all I can do, but for her, it seems to be enough.
I am amazed still at her innocence. All the crap she has gone through and she continues to be motivated by the most childish of things (and I mean that in such a loving way). She amazes me that she will walk to the playroom for a STICKER! To what lengths will I go for a sticker???? How about you?

Since we are going to be here for a while, we came up with a plan today to have the whole family in the same room for a while. The charge nurses gave us permission to bring all the children here at the same time for up to 2 hours during the week and at length on the weekends. Tonight was our first night which we used this privilege. Caitriona and Lauryn visited Naomi and I while Aaron took the other children to Mass. Then, they all came back and hung out for about an hour. Caitriona was a bit of a handful but the time was definitely worth it. Naomi, Lauryn and I played a game together. It was nice for Naomi to be distracted by her sister for a while so that I was not so needed by her.

Throughout the day today, Naomi walked on four different occasions. She did not want to walk for her fourth time today so I had to bribe her by promising to paint her nails when she was finished. So, that is on our agenda for tonight. I can tell she is very tired from the exercise and will likely be asleep before long.

Having woken at home with the other children today and then spending the night with them, I am feeling much more normal and a bit recharged. I think this arrangement can work to keep me sane and boost Naomi’s morale. At one point tonight, her, Lauryn and I were laughing so hard that we started laughing about how hard we were laughing. Every time we tried to stop (because it was hurting Naomi’s belly) we would start laughing at ourselves again. I told Naomi that if laughter is really the best medicine, then she would be well in no time. With my kids in one room for the first time in 6 days, I might sleep more peacefully tonight.

If anyone is sending a care package to Naomi, please note that there is a nurse here with the same name. So all packages should be clearly marked for FOURTH FLOOR: PEDIATRIC PATIENT, NAOMI WILSON. Thank you! We are at 3001 St. Rose Parkway Trail, Henderson, NV 89052.