I can hardly believe she is 19. While I wish all of her was 19, I'll never take the years, moments, days, for granted. She highly enjoyed getting mail and especially the pictures and treasures that were sent to her. We celebrated Sunday night with the family, and she had a great time. Happy birthday to my sweet girl.
Check out this post if you want to read about our recent infusion adventure. It's a good one.
You know that old hymn? It was roaring in my mind Monday morning. I woke up Sunday morning with a troubling physical event that *could* be related to my recent health concern. I continued on getting ready for church and got to church. A sweet friend took me by the arms and asked me how I was. I gave her a brief synopsis. I moseyed on to my seat, and another friend stopped me and my face must have told her something it didn't mean to. She stopped me and said what's going on? I gave her a very brief description of my morning, and she said, well, this is the place to be and I agreed. Worship was going and I was immersed, and you know how that one song will begin, and there I was at the altar, dripping some tears. That first friend came behind me and began to pray. Another friend was already up front with her son worshipping and she began to speak over me. ( not knowing anything of my morning) Eventually I was on my knees praying and seeking...willing away my fears and failures. Aside from my recent health issues, being a caregiver to a child who is medically fragile and has special needs is hard EVERY.SINGLE.DAY. Not only am I providing total care, I'm scheduling appointments, refilling meds, in meetings, completing training, fighting, and, yes, I mean fighting for her benefits. Phone calls, emails, texts, more meetings. All in tandem with her fighting me every step of her personal care and unfortunately, she gets into a place that reason cannot be made. She can't communicate. It is so very frustrating. Not to mention maintaining my home, raising a son and having relationships with my grown kids and grandkids and husband. So, I cried. I wept and prayed. Many prayed around me, I think. Someone put their hand on my sweating back and just stood beside me. It occurred to me; I hadn't even prayed over the insurance situations. So, I did. I prayed about Lillian. I asked forgiveness. I prayed for strength.
Monday morning, I made one more phone call in regard to the benefits she should be getting. It said 3 to 5 business day turnaround. Today, I got a return email. Two hours later, I got a confirmation of approval.
Mark 9:24 " And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief." I surrender all.
Song by
Our new infusion center was wonderful SOOOO glad we made the change. The room was the biggest we've ever had and the nurse was amazing. We had a little trouble getting liquid benadryl, but it shouldn't be a problem in the future.
She saw the dr in the bone density clinic...which was just a visit with another dr. They ordered some xrays and blood, all of which were normal. I think at this point we will continue to have to have bone density scans yearly.
Her vitamin D was normal, which makes me happy because that means she's absorbing. She's also over 100lbs which is great.
She continues to love church and has started spreading herself around the church with different friends. During worship, I often have to look for her because she is somewhere waving a flag.
We took a trip to the Ark Encounter, and she enjoyed that, riding in a stroller donated to us from another special needs family. There are fake animals in crates, and she kept talking to them like they were puppies. When we went to the buffet, the kind cashier did not charge us for her, which does not happen for us very often. I didn't expect it, and did ask for a child's price, but she just didn't feel right about charging us even for that. It was a perfect day, good weather and not crowded.
Her birthday is coming up. 19. 19 years. She is SO excited for her birthday, if anyone would like to send a card, she LOVES to get mail.
She was approved for the bigger waiver, we've jumped through all the hoops, but we are still in holding. "waiting on the state".
She has started having some rough behaviors towards me when it comes to her personal care, even hitting me at times. It has been a mental mind field. That is hard. On a daily basis. It is hard. To add to that I get NO grace from some of those closest to me. Menopause Michelle (or post chemo Michelle or WHATEVER) is struggling. If you see me and ask, how are you and I respond I'm ok. That's exactly what I mean. I'm only HUMAN. Jesus help me.
By the same token, I'm grateful to be alive. I'm grateful to be able to dry my hair standing up again.I'm serving again. Am I tired sometimes...yes.
Anyway, that's all for today. Thanks for your prayers and love.
We had an abnormal weekend. We traveled to Bloomington Friday night to stay in the Four Winds Inn and Marina. Saturday, we were taken out on Lake Monroe for a two-hour boat ride and then returned to live music and a BBQ luncheon. This organization comes out of FL once a year to do this FREE event for veterans and children with special needs and their families. All of the boat rides are given by volunteers that offer their boats, time and resources. I had never heard of it before and hoped it would be a fun opportunity for Lillian. How did it go...well, first and foremost, it was HOT. I'd have to say that was the only real downside.
We actually rode in a boat with just the captain and his first mate and us. It was beautiful. Lillian was very nervous and actually started to cry mid ride. We didn't make it a full two hours on the lake, but pretty darn close. I think she enjoyed herself, but her nerves got the best of her. She gave the boat captain 2 thumbs down when has asked her if she liked it. I am OVERWHELMED with gratitude by the number of people, volunteers (including the restaurant that served pork bbq, hamburgers with all the fixings, cookies, cole slaw, baked beans, mac and cheese.) There was also live music which takes me back to my childhood when my grandpa and uncles would sit around and "pick and grin".
As we were boating, the lovely co-captain shared with me that she was recently diagnosed with cancer. As she shared her story, I was realizing that God put us in this boat for this very reason. We had a brief chat and now I get to pray for her and her family on her journey. We, technically, should have been on the Sunday event but got moved to Saturday. Saturday night, there was a huge, dangerous storm that came through and damaged boats, docks, and trees. I'm not sure if they were even able to host the event Sunday. But God. He protected us from what might have been a very traumatic event. (We stayed the night before in the marina inn) Such a blessed outing. The gratitude I have is overwhelming.
I also got the chance to meet up with a longtime friend that I came to know thru Lillian's early days of therapy. She and I stay connected through Facebook and she donated a tote full of tools and various other crafting supplies to me. More and more blessings. I'm constantly blessed and humbled by the love and generosity I (and our family) continually experience.
I finish with pictures from our day.
Not great. Not great. She's been to 3 and we have experienced the same nurse. In all my years working in healthcare, I can't even think of a nurse who ever behaved in front of a patient this way. She curses, she's always at a 10. She's never mean to Lillian so to say, but this last time was all I could take. Admittedly, I have been in a hard place these last 6 months, surgery, chemo...maybe I'm just tired, but I just can't even think of dealing with her again. So, we saw GI for follow up and we are switching locations. Please pray this is a better experience. If you know me, you know I do NOT enjoy all this upheaval with new doctors and locations and such...AND even though she is 18, she's not an adult. It's just inappropriate, this nurse even refers to herself as the inappropriate nurse and she thinks it's funny. Well, I just don't think she really cares. What really gets me is I think she's just bitter and sad, and that's sad. I also get annoyed when they miss her veins or blow them which is usually what happens and they blame it on her. "she's dehydrated" "caffeine is bad" Lillian gets the same diet, fluids, nutrition every day around the clock. Also, I mistakenly grabbed the wrong extension tube for her meds and they had no means of giving them, so most of it wound up on her clothes and then the nurse asks me when do I want to start her infusion???? HELLO. So, that was her July 3 infusion.
She did start receiving SSI at the end of May. Much sooner than we expected. She also got accepted to the bigger waiver which we are still hanging in limbo for. She has had appointments with GI, Pulmonary, Gynecology recently. All went fine, Her cycles have been controlled since January, but of course she has one days after we see the Gyno. UGH.
I am delighted to be finished with chemo. My blood marker is normal and will start getting scans every 6 months for a couple years. (and blood work) I did get a kidney infection after my last chemo and it was rough. He said that is kind of common for people after chemo ends. My symptoms were so much worse with the last treatment and lasted much longer. He said that is typically with the drugs I was on. I am starting the feel much more normal. I still have chemo brain...it is real. I can't believe it is August and school has started. Pray for Ezekiel, he started in a brand new school. He says it's good and even though I know it was the Lord's leading, I felt bad for him not being with kids he's known his whole school life. We didn't move so I know those friendships will remain.
Sorry for the long gap in updating, but chemo. I think that's all I need to say. Thank you for your prayers, love and support. The journey continues. <3
Lillian saw her hematologist yesterday. I like him, he's very compassionate. He can only continue to see Lillian another year or so and then we will have to transition to adult medicine Hem/Onc. Strangely, though they are Norton Physicians Peds, they don't have affiliations with Norton Adult Hem/Onc. They do, however, have affiliation with UofL Hem/Onc. So, he said he could go ahead and refer her now to transition if I want them to. I said well, I'm not a huge fan of moving her yet, but whatever has to happen, must happen. At the beginning of the discussion, he asked how we were, my response, " I've had better days, chemo sucks". Lillian had also been sick so it's been craptown. Didn't say that but I'm saying it here. Here's where his compassion came in, he said "you're going through enough, right now, we'll revisit this in a year. Praise the LORD. Seriously. He ordered her some blood work but due to the fact that she's still battling snotpocalypse, he said one of them wouldn't be accurate. So, she has her next infusion in early May, so we are going to get the blood then. They still consider her a "tendency to bleed" rather than a bleeding disorder. He ordered us some more amicar (bleeding preventative.)
We then had Olive Garden, because the queen asked for it. The waitress was so gracious to bring my drink (even though I could not drink it) in a plastic cup. She also brought me plastic tableware. I can't touch/drink things that are even remotely cold without burning. (Making caregiving even more difficult) What I did eat (as eating this past week has been scarce) tasted so good but eating little still made me sick the rest of the evening. First world problems, right?
Lillian having Crohn's disease makes her more susceptible to colon cancer. Me being diagnosed with colon cancer, makes her even more prone. Going through what I'm going through right now forces me to consider if I would put her through this chemo process and it's agonizing. This is not something I dwell on (my Mom would say don't borrow trouble) but these are things I face given our circumstances. So, I'm getting it out of my head by writing it here.
Keep our son in your prayers as well. He's 11. This is a LOT for him to process. He had a huge breakdown a couple of weeks ago and it was HEART BREAKING. Lillian was so affected she called almost all of her sisters at 230am in the middle of the night with worry, which made them all worry. So I had missed calls from them at 230. When I called to find out what was going on, I then had to retell the story. This is hard. I'm emotionally wrecked due to the steroids and you all know I'm emotional as is. I have physical pain to deal with, but it pales in comparison to the mental anguish of my kids.
But, He is sovereign. He is good. This will all be for His glory. I heard a sermon recently, the pastor is a childhood friend..well we grew up together in church, he mentioned submitting to your circumstances is worship to Him. That really resonated with me. (hope I'm paraphrasing that right) All of the sermons I've been hearing have been speaking directly to me. I know that is no accident. God has already placed me in a position of allowing my situation to allow a total stranger to share his journey with me. Honestly, I think the Lord just knew this man needed to speak about his wife who had passed 15 years earlier of colon cancer. And there I was, just able to listen and let him share his heart.
This is hard and getting harder. But God. (that's a litte reminder from my Pooh)
Lillian started infusions at the adult infusion center in KY in March. Everything is quite a bit different when you enter the adult realm. They didn't do any blood work. They were not going to give her premeds, but I insisted. We've since seen the GI doctor (not NP) who stated blood work was only needed every 6 months and that he also didn't want to upsize her gtube...so we will just deal with the leaking. He does say she will continue to get premeds though. Also, I didn't have our guardianship papers with us (and even though I had a photo on my phone) they made her squiggle on the signature pad. Now, how can someone be made to sign something they don't even understand???????
We applied for her to get SSI. I got a letter Saturday that she will have to see their chosen psychiatrist for evaluation and testing. (to make sure we're not lying of course)
She struggled with sinus infection this week and it's been yuck.
This past week was also my 3 round of chemo and it gets worse every time.
Grateful for your continued prayers and support.
In His Love,
Michelle
Guardianship: We did go to court for legal guardianship and the judge approved our petition...there you have it folks...we're LEGAL Ha! I still need to get her to SSI to file for disability but time has been not been on our side.
Adult GI: She saw her adult GI for the first time and it was a great visit. She is scheduled to start her infusions at the adult infusion center come the end of March.
Toe Warts: the warts we had been so aggressively battled on her toes just disappeared. Craziest thing ever, but really a miracle. No dermatologist after all. Whee!
Flu: the flu finally caught up to us from little brother who was home sick about a week and Lillian came down on the Saturday just as he got better. It has been rough. We've been dealing with that this week and it has been rough on her. She still needs frequent treatments but she is sleeping much better. Again, so grateful to have managed this at home. She's finally up and trying to eat again, which even though she doesn't swallow this girl likes to chew. She's chomping on sour cream and onion pringles as I type.
Pulmonary: we do NOT have to move to adult pulmonary at this time which I'm grateful for.
I am now Lillian's home health aid. Since she turned 18, I was able to take classes and be state certified to be paid to be her health care worker. A HUGE BLESSING.
A note about me: I did have surgery on January 31st. The surgery was not able to be accomplished the "easier" way, so I have been recovering from a very invasive abdominal surgery. (think of a gutting a deer or dissecting a frog in biology, yes, I'm serious) I spent four days in the hospital and have been slowly, steadily recovering. I still have lots of restrictions for activity. I'm still sore and I've discovered muscles in my legs I didn't know existed. I would ask your prayers as I will undergo chemotherapy very soon for a period of three months. I rest in the sovereign Lord and knowing none of this surprises Him. Am I nervous? Yes. I'm concerned about my ability to care for children, especially Lillian. Not to mention maintaining my home. I do have a wonderful village of caring friends and family as well as all you prayer warriors out there. Keep them coming.
I'm tired. 😐 This healing and Lillian's sickness have been a double whammy. I'm grateful we are heading into a warmer season.
She's been relatively healthy, although she is struggling with some bowel issues, but it is not a Crohn's flare...the new group wants me to start her on benefiber to see if that helps. She and I are both at the tail end of an upper respiratory infection, but we've managed here at home. We can finally get back to church Sunday. (we moved to the balcony, though and she hates me for it)
Officially, we had her last infusion Wednesday at the Novak center. Her care will remain in KY. At the infusion she watched the movie FLICKA. She was crying at the end, but she still enjoyed the movie. Then we found a DVD of the brady bunch sitcom, and she loved it. I knew she would.
I'm not sure if I updated about immunology, but they want to see her again to continue to rule out CVID.
This evening, she got to hold her newest niece who arrived 5 weeks early. She's such a little peanut and Lillian smiled ear to ear the whole time she held her. These moments are precious.
Our little granddaughter Sunny is home and growing. She is a doll. She likes to talk, talk, talk. We got to spend some time with her and big brother on Saturday.
Life is never without it's surprises and struggles it seems. I would ask that you continue to hold our girl in your prayers as we brave the flu season. I would also ask that you keep me in your prayers, though I will not go into detail. All I will say, is surgery is eminent and I'm nervous about it. My hope is in the Lord, and nothing is a surprise to Him. If you're in a struggle, try to cling to that because that is what I am doing. Blessings friends, thanks for praying and stopping by.
An evening spent with family and dearest friends. Pizza, Cupcakes, presents...JOY!!!! Lunch at Chili's and shopping until you drop with Grandma.
Thank you Lord.
It has been a busy couple of weeks. Lillian followed up with two specialist and also had her infusion. That's a lot of trips to KY, y'all. Pulmonary added zyrtec to her meds as she seems to be struggling since we've had some outside time. It helped immediately, but unfortunately brought on a rough, long nose bleed on Saturday, so trying to find a balance there. It's a vicious cycle. Drainage equals irritation, irritation equals inflammation, inflammation triggers asthma. Sounds like she has to stay on pulmicort nebs twice a day now to manage her asthma. Discouraging as it indicates worsening lung function.
Endo ordered spinal xrays due to worsened DEXA scan results. No fractures from what I read but I haven't been officially notified by the team. She wants to see her again in 6 months. Could not pin her down on her thoughts on giving depo closer together.
Gynecology won't write us a script for depo to be given every two months, she wants me to notify her every time the dose is due to see how she's doing. (super easy and convenient, right?)
Lillian has been dealing with warts on her toes for some time so we are going to need to add another specialist to the list because despite all of the efforts I've tried, they have failed.
Immunology wants to check her again in 6 months as well, as she didn't respond very well to the prevnar vaccine. Her IgG is still low as well.
We no longer have a respite care provider. So there's that.
Our little Sunny is very close to getting to come home. Please keep Sunny, Rebecca, Aaron, and Sloan in your prayers.
Today Lillian saw a new dr for Immunology. They are going to run some blood work at her next infusion, to check and see if she might have the CVID. It will likely turn into this coming blood draw on the 18th, and addtional blood draw 8 weeks from then to coinside with her Remicade infusions. If, they determine she has this, they can start her on IVIG infusions to help build her antibodies. It would be tricky with the remicade, but she says it can be done.
I'm tired. TIRED. It is such a long day driving down and back, home for 30 minutes or so and back to pick up. And today, I almost got sideswiped by a box truck and a big pick up truck cut me off and almost hit me.
There are times when I have done her bathroom duties so many times in the day and night, I just grow weary. I'm grateful, but weary. Today, for unknown reasons, I was struck with a grief wave that she will never fall in love or get married or have her own family. It sounds stupid to even write, but it's true.
In other news, our most recent granddaughter, now 5lbs from 1lb 5 oz, is still hospitalized, but miraculously has no serious complications. Feedings are the issue, currently. Our daughter is frustrated and ready to have her whole family home. I know the feeling. It's hard for me to watch others suffer. It is especially hard to watch my children suffer.
Our dinner calls for me attention.
Hab. 1:7 The Lord is good, a strong refuge when trouble comes. He is close to those who trust in Him.
We had our follow up appointment with the Rheumatologist today. He had no significant findings that require treatment. The thought on her joints is that it came on with the Crohn's. It shouldn't get worse, and it is not likely to be reversed. (possibly with OT and paraffin therapy with stretching but maybe not)
He does suspect she might have an additional underlying immune disorder called CVID, common variable immunodeficiency. It lines up with a lot of her history and there are treatments available, but that will have to wait until September to see them for that.
I had to go re read my last blog post because so much has happened in just a few short weeks. She had her appointment with the Urologist and they have ordered a urodynamic study to check the pressures in her bladder. I'll spare you the details of the procedure, but I will tell you it won't be a pleasant event.
My second oldest daughter gave birth to our 7th grandchild, a little girl...emergently. She weighed in at a whopping 1pound 5 oz. She was life flighted to Riley and on day 3 of birth and remains there in stable condition. She is a miracle. Her name is Sunny. Pray for them all. Pray for all of us. This is hard.
To add to the "excitement" of our lives, our water heater went out Friday night and that is not a cost we were expecting to incur.
I'm struggling in this season. I can see an obvious decline in Lillian's health and stamina. It can be discouraging. She has been struggling with some type of cold that has required around the clock treatments and she's just starting to come out of that.
I spent days and many messages and phone calls to get Lillian a new travel nebulizer (which apparently isn't covered by insurance) Her liquid stomach med they want her on isn't covered by insurance. The professionals who are supposed to help with these things basically throw it back to me when they don't want to make more than one phone call. I could go on and on and that is just TWO of the issues I've dealt with recently on her behalf.
We did have a very dear friend donate the rest of the money for her attorney in regards to her guardianship. I'm so grateful. I keep telling myself things are going to improve. If we can just get through some of the next obstacles.
Transparency: I am not ok. My heart is heavy.
When I am weak, He is strong.
Lillian finally had her long overdue scopes and it revealed that her Crohn's is in remission. She did have a few minor issues but overall he was not concerned. Well, mildly concerned, but had no answer to the issue. She will continue with every 8 week infusions.
She saw a new doctor, a rheumatologist, and it was a very long appointment. He had no answers per se, just lots of questions. He did mention some other diseases he wanted to rule out. He did a very thorough overview of her history. He ordered some blood tests and about 20 xray films. It only took them four sticks and 2 additional hours to get all that done. We see him in June again. I should, by now, be used to going into appointments and coming out a bit overwhelmed. It's just more. More to deal with. More to process, just MORE. We already have a new a new dr (immunology) added to the list since some of her blood work came back. More.
We have an upcoming appointment with her urologist. She'll be delighted that we never got the testing the Nephrologist wanted because it is nearly impossible to collect her first urines of the morning three days in a row and run it to the hospital within the hour.
Also, there is something weird growing on her big toe and we'll be seeing the regular doctor for that tomorrow. #winningatmothering (yeah, it's been there a while and we thought it was athlete's foot..but it's not)
She had infusions today which went fine after 3 IV sticks.
She's currently holding a grudge against me because I bought her a dress at goodwill and I bought me a dress at goodwill, she thinks (today) mine is hers. It's been a great evening. *insert sarcasm*
Prior to all this, I was connected with a woman at the ARC of Jackson County. It's an advocacy agency for disabled individuals. Lots of good changes will hopefully be coming our way, but everything is a process and I'm the one doing the leg work to keep things moving. For the first time in 17+ years, I can finally see that our lives might look a little different. I feel like I have someone in my corner helping me navigate all that is coming. The agency has connected us to an attorney for the legal guardianship and t we were able to apply to the agency to help cover half the cost. That, alone, is HUGE. If that had been the only thing that came of that day, it would have been worth it, but so much more on the horizon. God willing. Most of all, I hope to have a personal friendship with this woman as our children our similar and walks are too. Meeting someone like us is like catching a life preserver in the ocean. (to me. don't get me wrong, we have a lot of very faithful, giving, praying, loving, there for us, friends.)
In other news, one of my daughters is experiencing some very serious complications with her pregnancy. If you could lift her and our little baby girl to the Lord, we would be so grateful.
Let me tell you, friends...our Lord is faithful. Transparency...I'm struggling. I'm just feeling weighed down. I know the Lord faithfully holds me up. Life is hard. This is hard. God knows, He sees, He hears, He answers. Keep looking up.
Lillian's scopes have been scheduled for 5/21 pending a blood test result and the approval of pulmonary and cardiology. That's Dr Lungs and Dr. Heart. We had a work in appointment with Dr Blood Monday morning at 900am. He was a new to us provider in the group. I liked him, he did not rush and took his time with us which I didn't expect. He also questioned my about her some of her physical issues such as her brachial plexus palsy and her crippled fingers. He decided she should see a rheumatologist. Yet another specialist. I kind of laugh as I contemplate it.
By the way, she'll be 18 this year. We will need to get a lawyer and become her legal guardians. I'm not sure how that will work considering we don't have money to pay an attorney. Pray about that would you? It is something we HAVE to do. There isn't an option. Also, turning 18 makes her a legal adult. I'm learning that her specialists may all have to transition to adult medicine. I'm just telling you, all of this is overwhelming. It is A LOT. I'm writing about it so I can unravel some of it from my brain.
By the way, 18!!! She'll be 18. I'm grateful. God is good.
Lillian had a visit this week with her GYN dr. She has missed mutliple appointments for various reasons on their end as well as her being sick. They have decided to give her depo shots every 3 months to see if that helps reset her body and then space the shots back apart. If that does not help her they want us to consider an IUD. Secondarily, she ordered another bone density scan because Depo can affect the bones.
We saw Dr GI today and he felt she looked good and blood work has been good. As we left, they gave us a letter giving us the date of her scope. It is May 21. Please pray she is able to get this scope done. It is well overdue. Again, due to recent illnesses her pulmonologist has not cleared her for general anesthesia.
We left and scheduled her follow up appt and went to lunch where she had a total breakdown with huge tears as she questioned me about the procedure. She also doesn't want to stay in the hospital which is a possibility depending on her other specialists. This is not typical for her. I told her not to cry because it wouldn't hurt and then I said, go ahead and cry, it's ok to be afraid. Heart. Wrenching.
He asked us before we left if we had any fun summer plans. How do I answer that question other than no.? No, we don't.
In case you're new here, I have been Lillian's primary caregiver her entire life. I could not return to work after her birth. By the grace of God and his provision over the years through friends and family we have stayed afloat. And that is still true today.
That's the update this week. Please pray for her to stay healthy.
I know the title is a bit of a ramble but stay with me. HA! Let's start with the cough and snot express. For over a week and a half Lillian has battled a nasty sinus infection, which inflames her asthma, which requires more treatments. Today, she is slightly improved, and by that I mean I have not needed to give her round the clock mucinex. We tried to take a walk today and about 10 minutes in her coughing was so bad we had to stop at my daughter's house and have another daughter take us home.(after baby snuggles, of course). In light of her feeling so crappy, I canceled her one year appointment with the hematologist. It is already rescheduled, so that lies ahead. She had her infusion, where they put us in isolation because of her copious drainage. ( the team still wanted her to have her infusion). I wish every infusion ran so smoothly. One IV stick. Everything flows so well, but man it makes for a LOOONNNGGG day. It doesn't help that sleep has been pretty sketchy with the CASE. (figure that out? See title) I'm tired. Can you tell? A little punchy, I might be.
So this morning, I called in her inhaled steroid for refills, as we ran out over the weekend and they don't deliver on the weekend anyway since we now have to get her Pulmicort from UofL pharmacy. The very nice lady calls me back and tells me it's being rejected by insurance. I was literally sitting at the table spending time in my Bible and study and I was reading this scripture when she called me with this information, "Is anyone among you in trouble? Let them pray." Now that is only a portion of James 4:13-15. Not to get too lengthy, but I struggle with growing short with people when things are constantly a problem. I just kept laughter in my voice (we've gotten this med from the same pharmacy for the past two months no issue) and in the back of my mind kept thinking the Lord is going to work this out. I prayed because I was in trouble. She needs that medicine. The girl put me on hold for over 20 minutes and as I attempting to place Lillian on her vest and breathing treatment, my cheek hung up the phone. Now, no one called back most of the day. I check my email and this girl has emailed me to say everything is fine and the meds will be here Wednesday.
I recently, tearfully shared with a friend that I feel like I'm having a harder time handling all the things. I don't know if it's aging, discouragement, lack of sleep, financial hardship, medical hardship or just all of it. All I do know, this life is temporary. My struggles hopefully help to bring forth the kingdom principles. Because we know that all things work together for good to those who love the Lord and are called according to his purpose. Romans 8:28 He knows tomorrow. I don't. He's the provider, I am not. He is the healer. I'll keep my eyes on him and try not to look at all that other stuff.
Lillian saw her pulmonologist today. She is not going to have her scopes next week due to the recent sicknesses she has endured. They want at least six weeks of wellness from the time of steroids before anesthesia is administered, and since she will be fully anesthetized, it's a no go. We are able to stop every four hour treatments as of Friday and she is back to her twice a days. She is finally behaving like herself, playing in her room and no longer a fixture on the couch. (which I can tell you does my my heart a world of good)
We attended church Sunday for the first time in weeks and we rejoined the main congregation. As I went forward to praise at the altar, the tears slowly fell. Next thing I knew, I was on my face on the floor wailing with body racking cries. There were many hands on me. I cried to the Lord for help because weariness was heavy on me. I use the word tired a lot. Turns out, it's not really being tired...it's weariness. The physical and mental exhaustion of caregiving mixed with the love and concern I have for my child is heavy. The good news is, He is truly the one carrying me. My feet would not hit the floor if not for His strength. Grateful does not seem to be nearly a strong enough word when I say I'm grateful. Grateful for the Lord, grateful for my family, my church, the prayers you all give. I released a weight that I'm not able to do in my home because it is too heavy for my girl to bear. A dear friend, prayed over me before and during that time and she said to me, I wish there was something I could do. I told her that was my problem, I wish there was something I could do. I *feel* helpless, but I'm not hopeless.
Do you need hope? I can tell you where to find it. just ask. He's waiting.
"And now Lord, for what do I wait? My hope is in You." Ps 39:7
Many of you know Lillian started running a fever last Saturday (1 week ago). By Sunday evening, I realized she was needing every four hour breathing treatments. When she gets a fever, she vomits. Always has. That creates the inability to feed her. ANYTHING. So, as long as we could keep her fever down, we could feed her. It has been touch and go all week. Four hour treatments around the clock is exhausting. Additionally, she looked terrible. By Wednesday I took her to the pedicatrician for a work in appointment. (i bet the office loves us ha!) They tested her for 2 flus, covid, and possible UTI. All of that was negative. I asked him to add a steroid to help with the asthma, and he did. She's been on an anitbiotic since Saturday to try to treat her impacted sinus. We divided that into two doses instead of one. Thursday we had elders come and annoint her and pray over her. By Thursday I was falling apart. Just sheer exhaustion. Friday, i contacted her Pulmonologist and talked with them and they said we are doing every thing we can do. I did increase her fluids after feeds to help battle dehydration. As I was up with her through the night, she was drenched in sweat each time. Today, she has acted more normal then we've seen her in a week. She literally hadn't left the couch. This has been a trying week. I am so very grateful she appears to be on the other side. I'm so thankful for our praying warriors and God who pours out His strength for her and me. I'm so grateful for Tina and her bringing us dinner and crispy cokes. I'm thankful for daughters who grocery shop for me and take and pick up Ezekiel. I'm thankful for each text and offer of help from my tribe! So, today I'm food prepping in between treatments and cleaning, and feedings.I've also reached that place of exhaustion where I have to write down all the treatment times because my brain is fried. I'm still tired and I still have days of round the clock treatments to do, but praise God for His healing. Thank you all for praying.
