I'm so sorry I didn't get a blog post written within the last 2 weeks. Things have been so busy and stressful.
Tomorrow around noon, we leave for the airport for another Dr. Jemsek visit. You can pray for me and Nellie. She's been really sick lately and decided tonight that she is "just going to forget this trip was ever planned." :) 'She's staying home'. Not really, but this looks big. I am running low on sleep from all that's been going on, so i need strength, stamina, and kindness.
From DC on Tuesday, we're going back to our grandparents in VA and will be there for a week celebrating Thanksgiving.
Overall I would say Nellie is a bit better. I think its best described as 2 steps forward, and only 1 back. She is still very sick, but different things show up that say she's improved a bit. She has more of a sense of humor, her skin rash has cleared up some, her walking is better some days, and shes more alert sometimes. All pretty small when looking at the big picture, but I am looking for all improvement i can find! :)
I will try to check back in after this weeks appointment and let you all know what is going on, what the Dr. has to say, and how the trip went.
Monday, November 19, 2012
Monday, November 5, 2012
Updates...
"We're sorry, but this part of the site is still in construction Continue to check back. We hope to have it finished this week."
In the mean time, November is National Family Caregivers Month. How shall we 'celebrate'? Or relax? I never had ANY clue how much work it was to take care of a sick person before i started doing it. And now i wonder how some do it for years on end. Well i've been at it for 2 years, but many more years some have done it.
In the mean time, November is National Family Caregivers Month. How shall we 'celebrate'? Or relax? I never had ANY clue how much work it was to take care of a sick person before i started doing it. And now i wonder how some do it for years on end. Well i've been at it for 2 years, but many more years some have done it.
Guest Post...
I've been trying to get a post written to update you all on treatment and how the last round went, how my appt was, and what we are doing differently. But I just haven't had the energy or brain power to do any of it. I've tried recording and re-recording videos instead of writing. I've tried. I know you all can't see that though, I understand.
But there is SO much you can't see. Right now that is the tears streaming down my face. Or the 20+ medications I take to get through a day. And my phone blowing up with ooh's and ahh's over this-
Now I guess here is where I need to understand that once again, you don't see the unfinished blog posts, the tears, you don't see the meds, or Doctors, or ER/hospital visits, and on and on.
But I'm in this bad place.
Every compliment I get on this photo, i take as one more person saying "you aren't sick, you look fine!".
Now don't get me wrong, I love each of you and appreciate your support, but I am writing out my true feelings and how this all is interpreted.
I've gotten this all my life, ever since I can remember I've been told that whatever my problem was, I was fine, I was being a hypochondriac, that I looked OK. And that's just it. Its just looks.
What else can you not see in this picture?
How sick I was that day and nearly cancelled on the photographer, but knew it was my only chance. The migraine....smiling in the light of out-doors with a migraine, this was a huge order for me. Then me hardly able to get back into my house and back into bed....I was in so much pain, and nauseous. Twitching and jerking. Vomiting and all sorts ensued.
And the other thing you can't see, which anyone would have had a good laugh at though, was my mom and the photographer pulling me to the back yard in my wheelchair. The ground was soft and I'm not lite, so it took them both to pull me out there....It was a little embarrassing...
When I look at that picture....I don't see me.
Because that isn't truly me right now.
The real me?
That smile felt completely fake. Most of them were, because when I was genuinely smiling, I looked dead. So I kept having to put this big, bright face on. Force my eyes open.
My eyes...I assure you, the wonders of photography programs are great, because mine aren't that bright naturally and the skin....haha...now I did actually asked the photographer, "can you make my skin look OK"?
I told my sister just this morning that my face looks like I was murdered. My skin is bad.
The real me right now?
I'm in bed all the time. Can still hardly walk. I'm light, sound, smell, and touch sensitive. Muscles twitching and spasming. Seizures, narcolepsy, insomnia, and anxiety.
These are just a few of the symptoms that make this world of mine, that I wouldn't wish on anybody, go around.
UPDATE ON ME AND TREATMENT
I am in D.C. every 6 weeks and I was just there 2 weeks ago. I had a test done at 9am and it lasted 2 hours. Afterwards Joel, Gwen, and Lila picked us up at the curb and we went to have the Georgetown cupcakes experience- they have a GF one by the way!
Next was finding the Apple store for Joel to look for something....it was a little interesting, as it is hard to use GPS in DC! And then we had to find a place to park! The ladies stayed in the car and just waited.
And then food. Ha! It was one of those GPS deals. AGAIN. We would find a place that sounded really good, drive to it and realize that it was in the middle of some mall or business. So we finally gave up and were going to go into the mall...we had time. Here you had to have a monthly pass to park in the garage!
It was an interesting hour+, trying to find some place. We eventually did, and it was the block behind my LLMD's office. Go figure!
And then my appt was at 2:30. The nurse said that my provider seemed quite concerned by my symptoms, which I had emailed the day before, and that she would be right with us. Well, we waited a LONG time until she got to us. Asked a few questions and she and Dr. J came up with a plan of treatment, dosing changes and treatment for the next 6 weeks.
I traded out Clindamycin for Cipro, which certainly didn't hurt my feelings! Clinda leaves a bad taste in your mouth for about 10 hours!
We were in the office until about 6:30....far past their closing time! As soon as we were checking out, the nurses and providers were heading out the "back door". In reality, it leads to the same hallway that we use, that is how we saw them. Haha
And then back to Baltimore we went. Thankfully the traffic wasn't bad, because we all know that I am a basket case in the car. Especially in DC!! Since we got in so late, Joel's just dropped us off and were on their way home. They have about 2 hours. And mom and I crashed into bed!
We had left that morning at 6:30 so that we could shuttle to the commute train station, catch the Marc, and its about an hour down to D.C. From the station we catch a cab to get to Dr. J's office. And we were a little early for the 9am appt, but I say a little early is right on time! I used to work in a Dr's office and understand!
We made it home and last week and this week I've been doing my treatments. They are pretty brutal, but I have hopes that they will really come to the rescue and help me get into remission!
I think I can already tell a difference in my walking, but others can't see it. At least I'm not scooting around the house as much, but that might change if my knees and ankles continue to be so weak.
Also depends on how sick I am. Yesterday, I shouldn't have been on my feet! I was moving so slowly, I could have been going backwards. I guess that is something that pain will do to you. And neuro issues.
Other than what I've already touched on, I'm not sure what else to update you on...
I'm getting kind of sad and depressed though. I feel as if life, the world, and my friends have left me behind for bigger, greater, and better, more fun things. I realize I'm not fun right now. But I still need friends! I just feel like I have been forgotten.
And just to clarify, this post has been written over the course of several days...Its just so hard to get your thoughts all put together and know what to say, how to say it and to simply be real and say it.
I appreciate all the love and support I have been given! I couldn't do it without you!!
And Especially to my family who have done fundraisers to raise money for my treatment! Its just amazing that there is so much love out there for me!!
I want to say Thank You to my Hilty Aunties for the fundraiser you did in my honor! I really appreciate it and want you to know that I love each and everyone of you and that I hope to see you all at Thanksgiving and thank you personally!!
Also to my second cousins in the Hilty family- they are more like first cousins since we know them so well!! :) Thank You for all your hard work and your love and thoughtfulness!!! I am blessed and humbled by all you have done for me!!
This is such a humbling experience! Needing people to help you daily. Needing help to even get treatment. Needing friends even when I can't give a ton back to them. But I know that there is a plan and a purpose for each moment. May God Bless you in your giving, your generosity, and your hard work toward my cause!!
<3 Lynnelle
Thursday, October 4, 2012
Hospitals.... and beyond
Thursday September 20 we started putting a plethora of symptoms together and got concerned. Nellies blood pressure 160/110 and on down, her pulse was as high 130 while being at complete rest for hours. She had gained 15-17 lbs in 2 weeks time, and was having to sleep sitting up. Her cardiologist, family dr, and Dr. Jemsek's nurse all said to go in to ER. So off we went.
8 hours later, we were leaving Lima Memorial ER. They had done blood work, chest x-ray, and urine and said she had pedal edema. (even though the ER dr walked into the room, saying she didn't have any pitting) {pedal edema is excessive fluid in the lower extremities (feet, lower legs)} We left very frustrated and tired.
When the rest of the world was waking up, Nellie was making more calls to her drs for help. Dr. Jemsek couldn't prescribe Lasix without physically seeing her, so we had to have help locally. She'd left messages at places and didn't hear back until after business hours on Friday.
So 5pm came, and we were heading back out the door to ER. Only this time to St. Rita's Medical Center. We chose SRMC because Nellie's cardiologist is with them. He wasn't in all weekend, but they would have her cardiology records available, etc.
That night in ER we waited a long time! we were both exhausted from having done the same thing the night before. I had "splurged" and taken a 2 hour nap, even though a cousin from out of town was coming. (hi Lyds :) I knew why I'd done it, or God had directed it, when i woke up to the words "we're going back to ER" hit my ears.
The dr's were very concerned with Nellie's vital signs. As Dr. Voit said, "you can't fake that". Around 4am she was admitted for more tests and observation. "funniest" thing is i totally don't, not at all, remember going from the ER room to her patient room on 4A. I was so tired i don't remember it.
We were going to leave Nellie alone for the night, because she would be fine and we needed our sleep, even though it was going against every grain of my being. I am suddenly feeling very protective of her for some reason. We didn't end up leaving her because Dr. Tuma, the admitting hospital doc, came into the room and wanted her history, pretty much from time of birth. Then he preceded to say she couldn't have this wrong with her, that's not possible, how can you take that many pills, thats not possible, and on and on he went. It sent me into the largest anxiety attach in my history, and sent Nellie into tears. He didn't believe her Ehlors Danlos Syndrome until he saw the super stretchy skin, and the extremely hyper mobile joints. (she could be a contortionist if she wanted to) Later he did come back in and take back one of the accusations he had made, but we were both upset. Needless to say, i stayed the night with her.
It was 5 til she was settled in her room, and we both clunked out!
We were in the hospital for 4 days and nights. I spent every night with her because i could sleep better in the chair up there than mom could.
8 hours later, we were leaving Lima Memorial ER. They had done blood work, chest x-ray, and urine and said she had pedal edema. (even though the ER dr walked into the room, saying she didn't have any pitting) {pedal edema is excessive fluid in the lower extremities (feet, lower legs)} We left very frustrated and tired.
When the rest of the world was waking up, Nellie was making more calls to her drs for help. Dr. Jemsek couldn't prescribe Lasix without physically seeing her, so we had to have help locally. She'd left messages at places and didn't hear back until after business hours on Friday.
So 5pm came, and we were heading back out the door to ER. Only this time to St. Rita's Medical Center. We chose SRMC because Nellie's cardiologist is with them. He wasn't in all weekend, but they would have her cardiology records available, etc.
That night in ER we waited a long time! we were both exhausted from having done the same thing the night before. I had "splurged" and taken a 2 hour nap, even though a cousin from out of town was coming. (hi Lyds :) I knew why I'd done it, or God had directed it, when i woke up to the words "we're going back to ER" hit my ears.
The dr's were very concerned with Nellie's vital signs. As Dr. Voit said, "you can't fake that". Around 4am she was admitted for more tests and observation. "funniest" thing is i totally don't, not at all, remember going from the ER room to her patient room on 4A. I was so tired i don't remember it.
here is a shot of her vitals. this wasn't at the highest, but it give you a clue what we were dealing with.
We were going to leave Nellie alone for the night, because she would be fine and we needed our sleep, even though it was going against every grain of my being. I am suddenly feeling very protective of her for some reason. We didn't end up leaving her because Dr. Tuma, the admitting hospital doc, came into the room and wanted her history, pretty much from time of birth. Then he preceded to say she couldn't have this wrong with her, that's not possible, how can you take that many pills, thats not possible, and on and on he went. It sent me into the largest anxiety attach in my history, and sent Nellie into tears. He didn't believe her Ehlors Danlos Syndrome until he saw the super stretchy skin, and the extremely hyper mobile joints. (she could be a contortionist if she wanted to) Later he did come back in and take back one of the accusations he had made, but we were both upset. Needless to say, i stayed the night with her.
It was 5 til she was settled in her room, and we both clunked out!
We were in the hospital for 4 days and nights. I spent every night with her because i could sleep better in the chair up there than mom could.
Saturday was very dreary.
Neidy brought balloons Saturday so it helped cheer up the room since it was rainy outside.
Sunday was 16 years since Papa died and we had a to take a picture to remember it by.
We were home by 8:15pm Tuesday night. I got Nellie home and settled in and then ran back to the pharmacy quickly to drop off scripts. She needs meds the next morning so it wasn't something that could wait til the next morning. We crashed into our own beds that night. It was good, for me, to get a whole nights sleep in my own bed! The hospital chair wasn't the worst thing in the world, but certainly not very comfortable.
The rest of that week we spent going to follow up dr visits. In between times, we did our best to catch up on good sleep. Nellie didn't want to leave the hospital because the bed was so comfortable. She could easily sleep sitting up, and prop her knees up, and all that good stuff. :)
I should probably try to explain what was wrong with her. :) Because of her POTS, she was on 2 different blood pressure meds. Between those and her daily fluids, it was too much. So her body went a bit crazy. Her cardiologist took her off of the 2 and put her on a different one. He said it was a good thing that all this happened and that she was in there. The fluids are helping her heart work, so she doesn't need the meds. Being able to go off of meds is always a good thing! :)
The symptoms she was having was pointing to Congestive Heart Failure, but all tests came back negative, so that is a big relief. We do have a lot of heart problems on both sides of the family, so it wouldn't be out of the realm of a possibility.
By now life has leveled back out, and things are mostly back to her normal. Because of her being so sick, her Dr. kept her off of her IV's and extra 2 weeks. Now she has to make all that up quick before their next appointment. So she is doing IV's every other day til they fly, which is a heavy dosing! She normally does 3 times a week, and has weekends off. She has been herxing a fair amount, but that is good. Just tough to deal with. She feels really sick, and is unable to do some things sometimes. So it takes more care from me.
Today she was having (worse than normal) vision problems, nausea, dizziness, and pretty bad narcolepsy. It made some things pretty entertaining. We were talking, she said "hold on", and fell asleep on me just like that. Thankfully i only had to say her name and she woke up again.
Dr visit 8/22/12
I should first update of the last Dr. Jemsek visit. (quick before i have 2 to update on :S) The last J visit was 8/21-23/12. Well the visit was only on the 22nd, but the trip was over that 3 day span.
The trip went well, the nonstop flights were amazing! :) The whole trip in general went very well. The only glitches we had were small, but unfortunately expensive. First we got the hotel address wrong, so instead of a free shuttle ride 2 miles around the corner to our hotel, we had a long taxi ride into downtown Baltimore, and back to our hotel right by the airport. There are 2 or 3 of every hotel in Baltimore, and so we grabbed the right hotel name, but wrong address. :S
The other mistake was we forgot the suit case of meds in the trunk of Joel's van. We didn't realize this mistake until we were packing up and walking out the door for the airport. By that time, it was too late for them to run the 2 hrs down to us, and bring it. So Joel shipped it next day. We needed them asap, and you don't let such things languish in the postal service.
The next DC visit is next week. Mom and Nellie fly out Tuesday afternoon and come home Thursday.
The trip went well, the nonstop flights were amazing! :) The whole trip in general went very well. The only glitches we had were small, but unfortunately expensive. First we got the hotel address wrong, so instead of a free shuttle ride 2 miles around the corner to our hotel, we had a long taxi ride into downtown Baltimore, and back to our hotel right by the airport. There are 2 or 3 of every hotel in Baltimore, and so we grabbed the right hotel name, but wrong address. :S
The other mistake was we forgot the suit case of meds in the trunk of Joel's van. We didn't realize this mistake until we were packing up and walking out the door for the airport. By that time, it was too late for them to run the 2 hrs down to us, and bring it. So Joel shipped it next day. We needed them asap, and you don't let such things languish in the postal service.
The next DC visit is next week. Mom and Nellie fly out Tuesday afternoon and come home Thursday.
Tuesday, August 21, 2012
Dr. Jemsek
We will be leaving in about an hour and a half for another Dr. Jemsek appointment in D.C. We praying for good smooth flights this time. I have confidence it'll be much better than last times trip. :) I'm actually pretty excited, we have nonstop tickets so it should be so smooth i'll wonder if it's magic. ;)
Tuesday, August 7, 2012
ER visit
Last night as Lynnelle was doing her evening meds, she forgot to prime the line. She hooked the empty (ie: full of air and not fluid) line up to her port. She infused about 28" inches of air before we caught it. Then she started feeling funny so we took her in to the ER. Mom would rather be on the safe side and take her in, rather to wake up and find her dead. That would be the worst case scenario, i know.
So around 10:30 we headed in. Mom and i were both winding down for the night getting ready to go to bed when suddenly its time to hurry to ER.
blankets and big boots trying to stay warm!
Since it can be such a serious problem we were taken straight back to a room and an EKG done right away. She also had a CT scan of her lungs and chest to see how much air was floating around in there.
In the end everything was okay which was a relief! We were home by about 3:30 AM. And crashed into bed. Poor mom had to leave at 7:15 for work, but today was one of her easy jobs so that was a blessing.
Cheesecake
We were blessed Friday when we received a cheesecake very anonymously in the mail from Eli's cheesecake. It was so random and unexpected. Jessica went on their fb page to thank them. They replied back saying... "We had read about Lynnelle's health challenges on her Blog and how she had a slice of Eli's Cheesecake when she travelled through O'Hare. We wanted to wish her well and bring her a smile so thanks for sharing her response". It was one of those simple blessings!!
Wednesday, August 1, 2012
from Lynnelle's blog
Last night she updated her blog, and i thought I'd share it on here.
I am Blessed!
I am alive.
I am blessed!
Our beloved car is dying.
We have been blessed with a car that we are so sad to think may not last much longer.
Please pray with us for a good replacement.
We are trying to have faith that God will provide again. But it's hard sometimes.
Also pray that we can find a way for Mom and Minnie to get Lyme treatment soon! They are sick too.
Just because they aren't as sick as I am, does not mean they don't need treatment too.
We don't want them getting as sick as me!
I have found a Lyme doctor close, but we don't have the funds at this point.
This is my off week of treatment, so you may expect a video blog update closer to the end of the week.
Once I stop sleeping non-stop.
I am blessed!
I am blessed!
Our beloved car is dying.
We have been blessed with a car that we are so sad to think may not last much longer.
Please pray with us for a good replacement.
We are trying to have faith that God will provide again. But it's hard sometimes.
Also pray that we can find a way for Mom and Minnie to get Lyme treatment soon! They are sick too.
Just because they aren't as sick as I am, does not mean they don't need treatment too.
We don't want them getting as sick as me!
I have found a Lyme doctor close, but we don't have the funds at this point.
This is my off week of treatment, so you may expect a video blog update closer to the end of the week.
Once I stop sleeping non-stop.
I am blessed!
Saturday, July 28, 2012
Finally at long last...
The post on our last D.C. trip is done! Here it is.....
DC trip 7/10-12/12
We left the house at the insane hour of 2:30 AM. Off to Dayton we headed with a stop for some food first.
Got to DAY in good time. Had a fun time trying to park. I'd looked online for which lot was cheapest, but when we got there Economy looked spookily dead. So we chose long term and in we drove. Parked as close as you could get and hauled ourselves in.
Our bag was weighing 53 lbs at home, so i took a lactated ringer out and put it in my back pack. Still overweight but only by a bit. I have always had gracious check in people so i decided we would deal with it when we got there. We waited a bit to check in and we weighed it on the scales next to ours. 51 lbs. When it came time to put it on our scales, God had taken it down to 50.5 lbs. The check-in lady said "well you can't get closer than that!" :) Shew! Thank you God! I knew it'd be OK! :) We checked our bag and sped through security. After all, not many security lines are miles long at 4:30 AM. Found our gate and settled in to read, sleep, listen to music, etc.
It was at this point that i realized i forgot my phone charger. Completely. It was a slight sinking feeling. But, what was done, was done. Nellie had her phone (and charger) so we'd be ok. I texted a few key family members and a friend telling them what was up so if they tried to reach me and couldn't they'd know what was up.
Our 5:50AM flight left on time and all was good.
Landed in IAD (Washington Dulles) around 7 something and were surprised to be dumped on the tarmac! Well Nellie can't do stairs very well so the stewardess said they could take us to another gate. Great, fine, lovely. But it didn't happen. So Nellie tried scooting down the stairs on her butt, as she does most stairs, however the stairs are coated with sandpaper grippy stuff, so you couldn't really slide. Epic fail. :(
We had nearly a 2 hour layover so we went in search of food. Even endeavored to walk the whole length of concourse B in search of our favorite food. But half way through the 2 mile walk, realized we wouldn't have time. To get from concourse A to B you had to take 2 elevators up, cross an 'overpass' and take an elevator down. weird and only slightly confusing.
We got to our gate early and told the gate agent that she couldn't do stairs, or walk the ramp, so they put her in a straight back (isle chair) and pushed her up the ramp. It was kinda funny. :)
When we boarded the last leg of our flight we were ready to be there! Landed in CHO (Charlottsville, Va) around 9:45AM. Once in CHO, we once more had to wait for a ramp and straight back. It was just slightly inconveniencing us, but still a bit annoying. As we we're waiting we were talking with the stewardess and she explained why we weren't getting jet ways. Basically United Express (who we were flying) doesn't feel like paying to get jet ways engineered for their tiny planes. So the morale of that story is, if you are disabled, don't fly United Express. Not only does United break guitars, they don't have jet ways for their Express planes.
In CHO we waited for about 25 min for my aunt to come pick us up. She'd had in her head that we got in at 11, so she planned to be there a bit early. Well we got in before 10. :) But the wait wasn't bad, we had some interesting people to watch that made the time go by.
Got to my grandparents around 11? I really don't remember now. Sat and talked with them and had lunch. Bliss! Eating with my lovely grandparents again. There is just no one like them.
After lunch they rested, Nellie dripped a bag of fluids and slept, and i went swimming for several hours with my cousins. I know lucky and dumb me! I had been up for 12 hrs already on basically no sleep. But i wanted to swim again. It was fun, but i did more floating than swimming.
After Nellie woke up, she was able to visit with one of her Bible School friends, Carolyn Rhodes, she hadn't seen in a while. That was really nice. I even got in on some of the visit.
After supper Uncle Darrell's and the girls came over. We sat and visited for about 30-45 min. After they left, we sat around and talked some, but we were all pretty worn out. Into bed for the night, Nellie and i had fun laying there talking for a bit before we feel asleep. It was so good to do that again. Kind of like old times when we'd stay up til wee hours of the morning talking. :) <3
We left Grandpas by 10AM and drove about 75 min to meet Joel's and have brunch. From there grandpas went home and we continued on to DC with Joel's. I slept most of the way so it went by fast. :)
We got to Dr. Jemseks office a bit early so Nellie could meet Kate, one of her Lymie friends. The office was really full! We finally were called back and the office cleared out some. :)
The visit was good. No huge news to tell. They have added a second IV drug Clindamycin to her already existing Merrem. They added some other drugs to the regime also. Mepron, is commonly referred to as 'yellow paint'. Its yellow and about the constistancy of paint. With that she is supposed to eat a fatty snack with it to coat her mouth so not so much gets stuck in her mouth. Any ideas?! She hates peanut butter, can't have Nutella because the chocolate makes her sick. We really do need ideas. Keep in mind this is twice a day, 3 times a week, for who knows how many weeks.
We spent 2 hours getting out of downtown DC. It was 5 til we were leaving and traffic was crazy, but Joel is a good driver! He's used to Guatemala driving after all!
We checked into our hotel and then went to go get some food. We hadn't really had anything but a couple of snacks Gwen managed to pack in her bag. Sugar snacks that the Lymies among us shouldn't be eating. Dark chocolate peanut m&m's-oohh lala! Filled Twizzlers in cherry and citrus flavors. meh. Could live my whole life without them.
We decided on Bob Evans. we got a table in the back as far from the noise and commotion as we could. Had a lovely dinner of fish, and open roast beef sandwich. Lila had fun running around after she got done eating. The poor child had been cooped up all day! Most of the time in her car seat.
Joel's came back to the motel with us. He repacked the carry on, Gwen took care of Lila and Nellie got ready to drip a ringer. They left quick before Joel fell asleep. Gwen knew she'd be driving home, poor dear. :)
Finally was ready to crawl into bed. Got a wake up call to ensure we woke in time and settled down for a 2 hour night of sleep. I was really sick that night so i only got an hour of sleep. I totally missed hearing the wake up call, thank goodness Nellie was awake and woke me.
Got ready and left. The shuttle ride went fine, smoothly at 4AM. Checked in, sped through security once more and were on our way. They never even batted an eye lash at our bag of IV meds. Joel had packed it well and put some tubing on top to cushion it a bit. Mom said they saw that on the x-ray and knew what was up, so they didn't question. Whatever the case, it was nice not to have the whole bag dug through.
Our flight to Chicago went well. We were so insanely tired we fell asleep right away. We missed most of the boarding, the pre-flight instructions, take off, drinks, everything! The stewardess woke me when it was time to sit our seats up for landing. And even then, i had to shake Nellie to get her awake. Zombies would have accurately described us.
We were starved and looking forward to getting food on our nearly 2 hr layover but we had no time! We rode to our next gate and were there none too early. (The pilot on our last flight had been an hour late due to being called last minute to do another flight. I do vaguely remember them announcing that.)
And this is where a lot of the problems begin. We went up to our gate agent at C3 to tell her we need a ramp and straight back, and that we have a bag of meds that has to go with US on the plane. Long story short we argued against her and another worker. We told them we had a Dr.s note and they didn't even care to see it. It was so strange how mad they got at us. They refused our flight saying it was physically impossible to fit that bag on the plane. Either they gate check it, (illegal according to airline regulations) or we go to customer service and find a different flight.
Off to customer service we went. It was about a fifth of a mile. Not terrible when you're talking Chicago O'Hare, but when you're pushing a wheelchair with one hand and pulling a 30 lbs carry on with the other, all on about 2 hrs of sleep, its a long way! We got in line, Nellie called Joel while i quick ran and got some Auntie Ann's pretzels. At least we can eat that while waiting in line. HA! We waited in line for 30 minutes and Joel was on the phone in Pennsylvania trying to figure things out. Then Joel said i was supposed to go back down to our old gate and get the ladies name. Ugh. Do you not get how tired i am? and that's another 1/4mile of walking? But i didn't have any choice.
We finally got to the front of the line, yay. And Joel said, "OK, go back to your old gate, they'll print your boarding passes for your next flight. It leaves at 2:18 and gets to Dayton at 4:20. (it was currently 9am) and they should give you food vouchers too!" off we head to our old gate. And then he tells us... "if they won't give you food vouchers, go to customer service and request them." At which point i nearly broke into tears. The day was proving to be way too long already. At this point we were supposed to be landed in DAY already, and we were just securing our next flight.
At our old gate they printed our boarding passes and said we had to go back to customer service for the food vouchers. Ugh. Back we went. Waited in line for another 30 min and it was finally our turn. I explained to the lady how we were denied our flight due to a bag of meds, and our next flight isn't for 5 hours. Can we have some food vouchers. She was upset that we were denied our flight, because she knew it was illegal to do that. She made some calls and finally gave us 2 $10 vouchers.
We set off in search of food. Not very easy. We wanted a quiet place and Nellie wanted a booth for her aching butt. Well ORD has 5 different terminals. And the little food maps only give you the food options for the terminal you're in. The options were scant! I couldn't believe they had nothing more than that! We finally settled upon a little Bistro Cafe place. Got an omelet to share. Perfect. It was a cool shnuppy place. We were so tired, and needed ice water, so we took the ice water off of the table and filled our water bottles. Nellie's bottle had a very small mouth so she made a royal mess. Mine went in just fine. :) We were able to laugh about it and hope the waiter wasn't too upset at having to clean up a soggy wet table.
Then off to Eli's Cheesecakes to spend the other voucher. :) We had nothing better to buy with the remaining $10. And $6/slice cheesecake isn't something we'd buy any day of the week, that's for sure. I got the Totally Turtle and Nellie got White Chocolate Raspberry.
Off we went in search of F11A, our new gate. We followed signs until they stopped saying which way F was. So we asked some dudes and they said it was in Terminal 2, around the corner in the next building. Oh great. But by then i was used to this whole idea of walking miles, i was feeling better with a lot of water and some food in my system.
We walked about a mile to our gate. It was a crowded concourse, so we picked a nearby corner and settled in to sleep. It was a corner so Nellie could prop her feet up on chairs in front of her, lean her head against the wall and sleep. I, on the other hand, had a small feather pillow (yes better than nothing!) but had the wheel chair in front of me, and was also responsible for a suit case of meds costing $9,000+! I slept some, but not that great. We set an alarm to wake us up so we didn't miss this flight.
Nellie was out cold and i had to work to wake her up. I was really glad though that she was able to get some sleep. Its not always easy for her to sleep. Went down to our gate and proceeded to argue yet again with the gate agent. Yes this bag of meds is going with us on the plane! They finally decided to let me try to fit it, but they knew it wouldn't fit. We told them we were not skipping this flight, we would be going on, with this bag. We showed them the Dr.s letter, they didn't even look at it, they didn't care. Its like they were out to prove a point. They also said the crew didn't want to put this bag up where they put their luggage, otherwise that'd be an option.
Once boarding opened, we were first to go through. While Nellie got strapped on to a straight back, i went on up ahead, determined to make this bag fit. I didn't get past the first row of seats, when the stewardess said "you'll need to put that up here!" She opened the crew hull and we stuck it in there. There was oodles of space and it was no big deal. Not sure where the gate agent got the idea that they didn't want to put it in there.
They'd also put Nellie in the middle of the plane and the stewardess said "i want her in 1A! I don't know why they put her way back there!" We'd already tried to switch seats and the gate agents wouldn't let us. Thankfully, God placed us on a flight with a very kind stewardess!
After i was seated, i looked under the seat, trying to decide if our bag would have fit securely. And indeed it would have!
It's times like these that you consider to be learning moments. Next time we have trouble, we try to convince them to let us try to fit the bag and under the seat is an option. If not, then you ask the crew member if they can place it up front. I feel much more prepared to take the next trip after this last flight. I never felt unprepared, but i feel like saying "watch our airports! here come the Hoovers with some experience and ability to fight for the law".
I think Nellie crashed once we got in the car at Dayton, and i would have too, but i had to drive an hour and a half home yet. It wasn't a bad drive, i was really dreading it though. I was so tired, i didn't want to have to think any more. Finally got home and the car unloaded and i totally crashed. I couldn't even think anymore. It was the craziest thing! We both slept for about 2.5 days straight.
I feel like even now, 2 weeks later, I am still catching up on sleep. It was a very hard trip due to the extremely early flights, and the day spent in Chicago fighting. If you know me, you know i HATE confrontation. I avoid it at all costs. It is especially hard when in a crowded busy airport and you feel like everyone is watching you to begin with. Then you start arguing to no end. That is really hard, but had to be done.
DC trip 7/10-12/12
We left the house at the insane hour of 2:30 AM. Off to Dayton we headed with a stop for some food first.
Got to DAY in good time. Had a fun time trying to park. I'd looked online for which lot was cheapest, but when we got there Economy looked spookily dead. So we chose long term and in we drove. Parked as close as you could get and hauled ourselves in.
Our bag was weighing 53 lbs at home, so i took a lactated ringer out and put it in my back pack. Still overweight but only by a bit. I have always had gracious check in people so i decided we would deal with it when we got there. We waited a bit to check in and we weighed it on the scales next to ours. 51 lbs. When it came time to put it on our scales, God had taken it down to 50.5 lbs. The check-in lady said "well you can't get closer than that!" :) Shew! Thank you God! I knew it'd be OK! :) We checked our bag and sped through security. After all, not many security lines are miles long at 4:30 AM. Found our gate and settled in to read, sleep, listen to music, etc.
It was at this point that i realized i forgot my phone charger. Completely. It was a slight sinking feeling. But, what was done, was done. Nellie had her phone (and charger) so we'd be ok. I texted a few key family members and a friend telling them what was up so if they tried to reach me and couldn't they'd know what was up.
Our 5:50AM flight left on time and all was good.
Landed in IAD (Washington Dulles) around 7 something and were surprised to be dumped on the tarmac! Well Nellie can't do stairs very well so the stewardess said they could take us to another gate. Great, fine, lovely. But it didn't happen. So Nellie tried scooting down the stairs on her butt, as she does most stairs, however the stairs are coated with sandpaper grippy stuff, so you couldn't really slide. Epic fail. :(
We had nearly a 2 hour layover so we went in search of food. Even endeavored to walk the whole length of concourse B in search of our favorite food. But half way through the 2 mile walk, realized we wouldn't have time. To get from concourse A to B you had to take 2 elevators up, cross an 'overpass' and take an elevator down. weird and only slightly confusing.
We got to our gate early and told the gate agent that she couldn't do stairs, or walk the ramp, so they put her in a straight back (isle chair) and pushed her up the ramp. It was kinda funny. :)
the beginning of a 20 ft ramp up into the plane.
When we boarded the last leg of our flight we were ready to be there! Landed in CHO (Charlottsville, Va) around 9:45AM. Once in CHO, we once more had to wait for a ramp and straight back. It was just slightly inconveniencing us, but still a bit annoying. As we we're waiting we were talking with the stewardess and she explained why we weren't getting jet ways. Basically United Express (who we were flying) doesn't feel like paying to get jet ways engineered for their tiny planes. So the morale of that story is, if you are disabled, don't fly United Express. Not only does United break guitars, they don't have jet ways for their Express planes.
In CHO we waited for about 25 min for my aunt to come pick us up. She'd had in her head that we got in at 11, so she planned to be there a bit early. Well we got in before 10. :) But the wait wasn't bad, we had some interesting people to watch that made the time go by.
Got to my grandparents around 11? I really don't remember now. Sat and talked with them and had lunch. Bliss! Eating with my lovely grandparents again. There is just no one like them.
After lunch they rested, Nellie dripped a bag of fluids and slept, and i went swimming for several hours with my cousins. I know lucky and dumb me! I had been up for 12 hrs already on basically no sleep. But i wanted to swim again. It was fun, but i did more floating than swimming.
After Nellie woke up, she was able to visit with one of her Bible School friends, Carolyn Rhodes, she hadn't seen in a while. That was really nice. I even got in on some of the visit.
After supper Uncle Darrell's and the girls came over. We sat and visited for about 30-45 min. After they left, we sat around and talked some, but we were all pretty worn out. Into bed for the night, Nellie and i had fun laying there talking for a bit before we feel asleep. It was so good to do that again. Kind of like old times when we'd stay up til wee hours of the morning talking. :) <3
We left Grandpas by 10AM and drove about 75 min to meet Joel's and have brunch. From there grandpas went home and we continued on to DC with Joel's. I slept most of the way so it went by fast. :)
We got to Dr. Jemseks office a bit early so Nellie could meet Kate, one of her Lymie friends. The office was really full! We finally were called back and the office cleared out some. :)
The visit was good. No huge news to tell. They have added a second IV drug Clindamycin to her already existing Merrem. They added some other drugs to the regime also. Mepron, is commonly referred to as 'yellow paint'. Its yellow and about the constistancy of paint. With that she is supposed to eat a fatty snack with it to coat her mouth so not so much gets stuck in her mouth. Any ideas?! She hates peanut butter, can't have Nutella because the chocolate makes her sick. We really do need ideas. Keep in mind this is twice a day, 3 times a week, for who knows how many weeks.
We spent 2 hours getting out of downtown DC. It was 5 til we were leaving and traffic was crazy, but Joel is a good driver! He's used to Guatemala driving after all!
We checked into our hotel and then went to go get some food. We hadn't really had anything but a couple of snacks Gwen managed to pack in her bag. Sugar snacks that the Lymies among us shouldn't be eating. Dark chocolate peanut m&m's-oohh lala! Filled Twizzlers in cherry and citrus flavors. meh. Could live my whole life without them.
We decided on Bob Evans. we got a table in the back as far from the noise and commotion as we could. Had a lovely dinner of fish, and open roast beef sandwich. Lila had fun running around after she got done eating. The poor child had been cooped up all day! Most of the time in her car seat.
Joel's came back to the motel with us. He repacked the carry on, Gwen took care of Lila and Nellie got ready to drip a ringer. They left quick before Joel fell asleep. Gwen knew she'd be driving home, poor dear. :)
Finally was ready to crawl into bed. Got a wake up call to ensure we woke in time and settled down for a 2 hour night of sleep. I was really sick that night so i only got an hour of sleep. I totally missed hearing the wake up call, thank goodness Nellie was awake and woke me.
Got ready and left. The shuttle ride went fine, smoothly at 4AM. Checked in, sped through security once more and were on our way. They never even batted an eye lash at our bag of IV meds. Joel had packed it well and put some tubing on top to cushion it a bit. Mom said they saw that on the x-ray and knew what was up, so they didn't question. Whatever the case, it was nice not to have the whole bag dug through.
Our flight to Chicago went well. We were so insanely tired we fell asleep right away. We missed most of the boarding, the pre-flight instructions, take off, drinks, everything! The stewardess woke me when it was time to sit our seats up for landing. And even then, i had to shake Nellie to get her awake. Zombies would have accurately described us.
We were starved and looking forward to getting food on our nearly 2 hr layover but we had no time! We rode to our next gate and were there none too early. (The pilot on our last flight had been an hour late due to being called last minute to do another flight. I do vaguely remember them announcing that.)
And this is where a lot of the problems begin. We went up to our gate agent at C3 to tell her we need a ramp and straight back, and that we have a bag of meds that has to go with US on the plane. Long story short we argued against her and another worker. We told them we had a Dr.s note and they didn't even care to see it. It was so strange how mad they got at us. They refused our flight saying it was physically impossible to fit that bag on the plane. Either they gate check it, (illegal according to airline regulations) or we go to customer service and find a different flight.
the 'offending' carry on bag of meds.
Off to customer service we went. It was about a fifth of a mile. Not terrible when you're talking Chicago O'Hare, but when you're pushing a wheelchair with one hand and pulling a 30 lbs carry on with the other, all on about 2 hrs of sleep, its a long way! We got in line, Nellie called Joel while i quick ran and got some Auntie Ann's pretzels. At least we can eat that while waiting in line. HA! We waited in line for 30 minutes and Joel was on the phone in Pennsylvania trying to figure things out. Then Joel said i was supposed to go back down to our old gate and get the ladies name. Ugh. Do you not get how tired i am? and that's another 1/4mile of walking? But i didn't have any choice.
We finally got to the front of the line, yay. And Joel said, "OK, go back to your old gate, they'll print your boarding passes for your next flight. It leaves at 2:18 and gets to Dayton at 4:20. (it was currently 9am) and they should give you food vouchers too!" off we head to our old gate. And then he tells us... "if they won't give you food vouchers, go to customer service and request them." At which point i nearly broke into tears. The day was proving to be way too long already. At this point we were supposed to be landed in DAY already, and we were just securing our next flight.
At our old gate they printed our boarding passes and said we had to go back to customer service for the food vouchers. Ugh. Back we went. Waited in line for another 30 min and it was finally our turn. I explained to the lady how we were denied our flight due to a bag of meds, and our next flight isn't for 5 hours. Can we have some food vouchers. She was upset that we were denied our flight, because she knew it was illegal to do that. She made some calls and finally gave us 2 $10 vouchers.
We set off in search of food. Not very easy. We wanted a quiet place and Nellie wanted a booth for her aching butt. Well ORD has 5 different terminals. And the little food maps only give you the food options for the terminal you're in. The options were scant! I couldn't believe they had nothing more than that! We finally settled upon a little Bistro Cafe place. Got an omelet to share. Perfect. It was a cool shnuppy place. We were so tired, and needed ice water, so we took the ice water off of the table and filled our water bottles. Nellie's bottle had a very small mouth so she made a royal mess. Mine went in just fine. :) We were able to laugh about it and hope the waiter wasn't too upset at having to clean up a soggy wet table.
Then off to Eli's Cheesecakes to spend the other voucher. :) We had nothing better to buy with the remaining $10. And $6/slice cheesecake isn't something we'd buy any day of the week, that's for sure. I got the Totally Turtle and Nellie got White Chocolate Raspberry.
The turtle one is looking a bit sad by now, since it's been carried a mile in a purse. The top slid off but it was still amazing! :)
Off we went in search of F11A, our new gate. We followed signs until they stopped saying which way F was. So we asked some dudes and they said it was in Terminal 2, around the corner in the next building. Oh great. But by then i was used to this whole idea of walking miles, i was feeling better with a lot of water and some food in my system.
We walked about a mile to our gate. It was a crowded concourse, so we picked a nearby corner and settled in to sleep. It was a corner so Nellie could prop her feet up on chairs in front of her, lean her head against the wall and sleep. I, on the other hand, had a small feather pillow (yes better than nothing!) but had the wheel chair in front of me, and was also responsible for a suit case of meds costing $9,000+! I slept some, but not that great. We set an alarm to wake us up so we didn't miss this flight.
Nellie was out cold and i had to work to wake her up. I was really glad though that she was able to get some sleep. Its not always easy for her to sleep. Went down to our gate and proceeded to argue yet again with the gate agent. Yes this bag of meds is going with us on the plane! They finally decided to let me try to fit it, but they knew it wouldn't fit. We told them we were not skipping this flight, we would be going on, with this bag. We showed them the Dr.s letter, they didn't even look at it, they didn't care. Its like they were out to prove a point. They also said the crew didn't want to put this bag up where they put their luggage, otherwise that'd be an option.
Once boarding opened, we were first to go through. While Nellie got strapped on to a straight back, i went on up ahead, determined to make this bag fit. I didn't get past the first row of seats, when the stewardess said "you'll need to put that up here!" She opened the crew hull and we stuck it in there. There was oodles of space and it was no big deal. Not sure where the gate agent got the idea that they didn't want to put it in there.
They'd also put Nellie in the middle of the plane and the stewardess said "i want her in 1A! I don't know why they put her way back there!" We'd already tried to switch seats and the gate agents wouldn't let us. Thankfully, God placed us on a flight with a very kind stewardess!
After i was seated, i looked under the seat, trying to decide if our bag would have fit securely. And indeed it would have!
It's times like these that you consider to be learning moments. Next time we have trouble, we try to convince them to let us try to fit the bag and under the seat is an option. If not, then you ask the crew member if they can place it up front. I feel much more prepared to take the next trip after this last flight. I never felt unprepared, but i feel like saying "watch our airports! here come the Hoovers with some experience and ability to fight for the law".
I think Nellie crashed once we got in the car at Dayton, and i would have too, but i had to drive an hour and a half home yet. It wasn't a bad drive, i was really dreading it though. I was so tired, i didn't want to have to think any more. Finally got home and the car unloaded and i totally crashed. I couldn't even think anymore. It was the craziest thing! We both slept for about 2.5 days straight.
I feel like even now, 2 weeks later, I am still catching up on sleep. It was a very hard trip due to the extremely early flights, and the day spent in Chicago fighting. If you know me, you know i HATE confrontation. I avoid it at all costs. It is especially hard when in a crowded busy airport and you feel like everyone is watching you to begin with. Then you start arguing to no end. That is really hard, but had to be done.
Our next trip is scheduled for August 21-23. Our flights are late afternoon ones, so hopefully the trip won't be so sleep deprived. We also found our favorite nonstop flights, so that's exciting also!
Tuesday, July 17, 2012
Mail...
With the new treatment Lynnelle is on, she is feeling worse. That's a good thing, it says the bugs are dying off and that's what we want. :) She loves cards and boxes in the mail and could really use some cheer in the next couple months. So if you feel led, she would appreciate some mail. If you go to the Contact Us link you will find an address to send stuff to. And if you send a card, she would really enjoy seeing a family picture with it. It doesn't matter if its a year or two outdated, but it gives her an idea of who is sending her some love and cheer. :)
Thank you all for your care, support and prayers. We do immensely appreciate it!
Thank you all for your care, support and prayers. We do immensely appreciate it!
Progress. . .
We were to D.C. this past week and got more meds. :) There really isn't much to say about the actual Dr. visit, but the overall trip was pretty crazy! (is that a bird or a bat trying to fly into my room? its being held back by the window and a/c unit. disturbing!) A post will be coming later this week on the overall crazy trip.
For now, we have tickets bought and hotel booked for Augusts appointment. YAY! :) It feels good to have that done, out of the way, and able to plan on it. God blessed us with good ticket prices so that I (Minnie) could go along and help mom.
So August 21, we once more head out to BWI (Baltimore, Md). We fly into/out of, and stay in Baltimore because it is cheaper.
For now, we have tickets bought and hotel booked for Augusts appointment. YAY! :) It feels good to have that done, out of the way, and able to plan on it. God blessed us with good ticket prices so that I (Minnie) could go along and help mom.
So August 21, we once more head out to BWI (Baltimore, Md). We fly into/out of, and stay in Baltimore because it is cheaper.
Sunday, July 8, 2012
Happy Birthday!
Today our dearly beloved Grandpa turned 80 and our darling niece turned one. One of our good friends Talley turned 26 today also. Wow, a lot of birthdays. This is an ode to the special birthday people in our lives.
this was taken in November 2011
Here Lila is enjoying little games in Dr. Jemsek's office. This was just last month.
and she even got to try out Aunt Nell's wheelchair. :)
and here is Talley and her wonderful little family. :)
Its been too long. . . .
My apologies for it being so long in between updates. Life has been crazy around here! I was gone for an extended weekend and came home to more craziness. This is one of the things that is faster to go when bills, laundry and food are calling my name.
Today Nellie has had a hard day. A lot of leg pain and pelvic pain to the point she can't get comfortable. She's also had pretty bad chills and sweats. So one minutes shes freezing cold, so she puts the second blanket on, and the next minute she is literally dripping in sweat. I know from a bit of that that I've had, that its tough. You are never comfortable temperature wise.
Monday night around 2:30 we leave for the airport. Its time for another dr visit in D.C. again. We are making a short stop in at my grandparents place on Tuesday. (My grandparents are very close to us since we grew up having them next door. They always did a great job filling in when mom wasn't home.) Appointment on Wednesday and fly home Thursday. So we could use a lot of prayer. Nellie is feeling so poorly right now shes not sure how she'll make the trip. :(
Finally here is the video of her walking that didn't publish before. Its gotten considerably worse in the last month or so, to the point it scares me to watch. And i live with it and don't get easily scared...
so the first video is of her without a cane, and the second one is with a cane. i think these were taken in march.
Today Nellie has had a hard day. A lot of leg pain and pelvic pain to the point she can't get comfortable. She's also had pretty bad chills and sweats. So one minutes shes freezing cold, so she puts the second blanket on, and the next minute she is literally dripping in sweat. I know from a bit of that that I've had, that its tough. You are never comfortable temperature wise.
Monday night around 2:30 we leave for the airport. Its time for another dr visit in D.C. again. We are making a short stop in at my grandparents place on Tuesday. (My grandparents are very close to us since we grew up having them next door. They always did a great job filling in when mom wasn't home.) Appointment on Wednesday and fly home Thursday. So we could use a lot of prayer. Nellie is feeling so poorly right now shes not sure how she'll make the trip. :(
Finally here is the video of her walking that didn't publish before. Its gotten considerably worse in the last month or so, to the point it scares me to watch. And i live with it and don't get easily scared...
so the first video is of her without a cane, and the second one is with a cane. i think these were taken in march.
Tuesday, June 26, 2012
Link to Nellie's blog
Here is a link to Lynnelle's personal blog if you all would like to keep up with her spuratic posts. :) She isn't often able to update but some times she can.
Monday, June 25, 2012
Sleep Study
A couple of weeks ago Nellie got her sleep study done and boy was it an experience! The place was only slightly creepy. "Just a lil bit!" Bed skirt was torn, curtains sagging etc. It gave me the impression of a nice room you'd rent by the hour, not one you would go to for a sleep study! You are so hooked up to cords, we're not sure how anyone could sleep very well though!
First Week of Treatment
Unfortunately i've been too busy to update earlier. Lynnelle has her first treatment a week ago today. She infuses antibiotics twice a day on Mondays, Wednesdays, and Fridays, 3 weeks on, 1 week off. On the off days she does lactated ringers for detox.
Last monday we went to Outpatient at the hospital to have her dressing and needle changed. It was a very bad and traumatic experience. The nurse didn't know what she was doing, and so things were stressful. Not to mention it was very painful for Nellie since the port had only been in 7 days. They'd tried to draw blood from it, and it wasn't working. A blood clot formed in her line due to the design of her line, so Thursday we went back to Outpatient to get the needle and dressing rechanged. We didn't want the clot moving and decided to play it safe rather than sorry.
We were really glad we got the whole thing changed when the nurse pulled blood clots out of her port when she was flushing the new line. There was just some big problems with Mondays dressing.
Needless to say, we are very grateful that we have Home Health set up to come out to the house and do dressing and needle changes. At least we don't have to go some place to get it done.
Now for some pictures...
this is what happens when you still have some fluids left to drip when you hurry out the door for an appointment. :)
Last monday we went to Outpatient at the hospital to have her dressing and needle changed. It was a very bad and traumatic experience. The nurse didn't know what she was doing, and so things were stressful. Not to mention it was very painful for Nellie since the port had only been in 7 days. They'd tried to draw blood from it, and it wasn't working. A blood clot formed in her line due to the design of her line, so Thursday we went back to Outpatient to get the needle and dressing rechanged. We didn't want the clot moving and decided to play it safe rather than sorry.
We were really glad we got the whole thing changed when the nurse pulled blood clots out of her port when she was flushing the new line. There was just some big problems with Mondays dressing.
Needless to say, we are very grateful that we have Home Health set up to come out to the house and do dressing and needle changes. At least we don't have to go some place to get it done.
Now for some pictures...
Here is the port unaccessed. Not much to see since it's all below the skin, but the port is the lower, bigger bump.
Here it is accessed. Not much to see from this angle either. The blue end is what she screws her lines into to drip the infusions.
Lila Sue got the privilage of going to D.C. with her mama and papa when they went for Aunt Nell's dr. visit. :) she liked rides in the wheel chair!
This was the first treatment at home..
this is what happens when you still have some fluids left to drip when you hurry out the door for an appointment. :)
Here is the blood clot in her line. She said it would move a bit when she would flush the line.
And this is how we shop! I figured out a way to prop the basket on the back of her chair. I was pretty pleased with myself. i can't easily hold a heavy-ish basket and push a chair, and its big for her to hold on her lap. Extra props for putting it here and her not even knowing it until the stuff she kept handing me was 'going into oblivian' ;) yay!
Monday, June 11, 2012
Still waiting
Nellie called me at 2 and said they were running late and she still hadn't been taken back for surgery. Hopefully by now, she is in surgery!
"Happy Birthday Papa!!" is the caption of this picture. Papa would have been 56 today.
"Having fun." was her caption. She was really just missing me. :)
Sunday, June 10, 2012
They have embarked!
Mom and Lynnelle left around 10:30 this morning for the airport. They were scheduled to arrive at Washington-Reagan around 5:30 tonight. In times like this, i consider no news to be good news. :) i haven't heard from them since they were at their gate in Detroit, but i am not worried. If i felt the need, to know, I'd call them. :) I am sure they're are tired from the day.
Yesterday was a very full, stressful and tiring day! It was full of various home projects and helping them get ready. I also worked on book work for hours.
Tomorrow arrival time at the George Washington Hospital is set for 11:30 and surgery is set for 12:30. Prayers would be greatly appreciated! Tuesday they head to Dr. Jemsek's office and do first antibiotic treatment. Wednesday they fly home again.
I'll try to keep this thing updated better. sorry about the infrequency of posts.
Yesterday was a very full, stressful and tiring day! It was full of various home projects and helping them get ready. I also worked on book work for hours.
Tomorrow arrival time at the George Washington Hospital is set for 11:30 and surgery is set for 12:30. Prayers would be greatly appreciated! Tuesday they head to Dr. Jemsek's office and do first antibiotic treatment. Wednesday they fly home again.
I'll try to keep this thing updated better. sorry about the infrequency of posts.
Monday, June 4, 2012
May i shout from the roof tops?!?!
Lynnelle officially has an appointment Monday for her port surgery in D.C. This is so exciting!! I don't have much else to say at this moment. This is very recent so i'm not sure if we even have tickets yet.
thanks to all of our supporters! you mean a lot to us!
thanks to all of our supporters! you mean a lot to us!
Friday, May 11, 2012
In need...
of lots of prayer! We are working right now to get funds to start treatment. Its taking time, patience and wisdom. We are really needing your prayers. Life is hard and very challenging. We all need grace, patience, forbearance, wisdom, and love, just to name a few.
You can pray for Joel as he heads up this big 'adventure' and handles the financial aspect of it. Mom, as she is the mom, :) but also sick and doing her best to work full time. Its a lot! Minnie, as she takes care of Nellie, and does her best at the house work. It takes a lot of patience and grace to be the Christ-like person she wants to be. Right now she has some financial needs as well that she's waiting for God to fulfill. She is also sick with Lyme Disease and treating, or trying to anyway. The funds are sometimes lacking for her as well. And last, but not least, for Nellie as she lays in bed, living through all kinds of pain and sickness. She needs love, encouragement, and treatment.
Thank you all for your generous support!!!
You can pray for Joel as he heads up this big 'adventure' and handles the financial aspect of it. Mom, as she is the mom, :) but also sick and doing her best to work full time. Its a lot! Minnie, as she takes care of Nellie, and does her best at the house work. It takes a lot of patience and grace to be the Christ-like person she wants to be. Right now she has some financial needs as well that she's waiting for God to fulfill. She is also sick with Lyme Disease and treating, or trying to anyway. The funds are sometimes lacking for her as well. And last, but not least, for Nellie as she lays in bed, living through all kinds of pain and sickness. She needs love, encouragement, and treatment.
Thank you all for your generous support!!!
Tuesday, May 8, 2012
The last 7 days...
This isn't very exciting news, but it is what life has been like for the last week. Nellie called for an anointing, so Thursday night saw us participating in that. It was a very nice service.
Friday Mom and i (Minnie) left for Virginia for my cousin Amanda's wedding. William came home that evening for the weekend so Nellie wasn't alone. Thanks to Charissa for taking Nellie to town for some appointments on Monday. We were unable to make it home in time due to a break down in White Sulfur Springs, WV. It is always nice to have someone close by, to help with things if we're gone.
Nellie told mom when we got home she was having some trouble with her eyes. Since she is prone to Pink Eye, and was displaying symptoms of it, mom gave her some antibiotic eye drops. It still wasn't very resolved so Nellie made an appointment with the eye Dr.
Today we went to see our favorite eye Dr. and he concluded that she just had some eye lashes growing into her eye. They were scratching the eye and irritating it. He was thrilled thats all it was and so were we!
I have not had much time to get that other video of her walking up. I will try to do it soon.
Friday Mom and i (Minnie) left for Virginia for my cousin Amanda's wedding. William came home that evening for the weekend so Nellie wasn't alone. Thanks to Charissa for taking Nellie to town for some appointments on Monday. We were unable to make it home in time due to a break down in White Sulfur Springs, WV. It is always nice to have someone close by, to help with things if we're gone.
Nellie told mom when we got home she was having some trouble with her eyes. Since she is prone to Pink Eye, and was displaying symptoms of it, mom gave her some antibiotic eye drops. It still wasn't very resolved so Nellie made an appointment with the eye Dr.
Today we went to see our favorite eye Dr. and he concluded that she just had some eye lashes growing into her eye. They were scratching the eye and irritating it. He was thrilled thats all it was and so were we!
I have not had much time to get that other video of her walking up. I will try to do it soon.
Tuesday, April 24, 2012
Really quick here...
the videos don't seem to be playing for me. I will try to fix it, but it may take a day or so. I'll try to let you all know when they're fixed.
Off to finish my bridesmaid dress for Saturdays wedding. Thanks to mom for helping me with some tough stuff while i updated this. :)
Off to finish my bridesmaid dress for Saturdays wedding. Thanks to mom for helping me with some tough stuff while i updated this. :)
Picture Post of Ohio
Nellie with Joel's kids Leah and Zach
and Lexi and Lila.
First ER visit in Ohio. Her combo of pills made her feel really sick so we went in for monitoring and fluids.
Alisa is a Lyme friend and she got her CD for her birthday. :)
Another surgery. Boots keep her feet and legs warm while waiting.
a bad day with swollen face.
bruises due to blood thinners
the only way she can cook.
this is her new dresser for IV supplies. She really likes her drawer liner, but she said she'll probably never seen it for all the supplies will hide it from view.
ice pack applied to migraine
a very painful IV.
the most painful IV ever.
the only way she can even attempt to remember things, and yet she still forgets
packages are SO FUN! :)
green shoes for Lyme Awareness
illegal (which means not gluten free) pleasures :)
At this appointment i was in her wheel chair (more comfortable than the chairs they offered) and she was in the patient recliner. The Dr. came in and couldn't figure out which was the patient. :)
pills just to help her sleep
snow greeted us soon after we moved home. :) oh for happiness!
some precious sleep!
tilt table test. NOT fun!
treatment plans from Dr. Jemsek. Highlighters make it easier for Lymie brains to keep straight. :)
walking without cane in February.
Getting her pills ready for the week. Yes, this is only for a week.
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