The months of September, October, & December flew by, as is their wont to do. School, work, errands, tests, presentations, assignments, check-ups, dentist visits, new arrangements at CA's work (for the better), lots of baking, cooking, cleaning, shopping, holidays, celebrations, parties, gifts, & candy made the time fly. All the same exciting/ordinary things that happen in your houses too. Hence the no reporting on them. No news is good news, so it's said.
As we are on Christmas break here & I am all caught up, for the minute, w my responsibilities, I thought I would take a minute to ponder the great wonders of the universe. Not really. Just passing on some things I've thought about or noticed lately. Nothing earth-shattering, nothing that will change the face of human existence or even everyday life that goes on in this house. Just "things".
For example; we moved here to Wisconsin July 1st, 2011. We've been here 6.5 years! That's a long time for us. Now granted we did move once we were here but only 10 minutes from our original rental house, that we lived in for just over 4 years. Needless to say, we have come to love this state & living in the country.
While pondering how long we've resided in this part of the country I noticed some other things. I no longer get super depressed in the winter like I did in the beginning. I do get frustrated w the mushy end of winter that leads into spring, but only because I get sick of cleaning floors from dog feet. So once the beginning of April through mid-May arrives, I get a little grouchy. But not sad or depressed. I revel in the snow & the cold. The lack of sunshine, that I grew accustomed to living in most of my life in Southern California & then in Phoenix doesn't bother me as it did in the beginning.
Another thing I noticed about the cold weather is the cold weather isn't that cold to me anymore. Well, unless it becomes sub-zero weather accompanied by large wind gusts. Those temps are meant for polar bears, not people. But I can handle the temps all the way down to the 20s without needing to cover myself in 5 layers. When we first moved to a colder clime I would wear; thick tights, jeans, a couple pairs of thick wool socks, snow boots (even when there was no snow -just cold temps), one of those huge jackets with extra layers inside, over top of a great big thick hoodie, w a thick scarf, thick gloves, & a big woollen hat. Basically, by the time I was done preparing myself to go outside, even for a short walk to my car & then into a store, I felt like Ralphie's kid brother Randy, who regularly screamed at his mom, "I can't put my arms down!" Not anymore. I have ditched the tights, down to regular socks & shoes, and only one level of my winter jacket. The scarf tends to make me feel like I'm suffocating, so I ditched it & the hat, but the hat went because I didn't enjoy having to keep the hat on once I arrived at my destination or everyone would see my horrendous hat hair. Once the temps hit 30-35 degrees I am in a hoodie only. By the time they climb back up to the fifties I'm wearing capris & no socks again. What does all of this mean? Not much, except that I've acclimated completely. As have CA & my kids...except Liam. He has never handled cold or hot temperatures well. He has a sensitive body system. If for some weird reason we had to move back to Phoenix I would be miserable in the heat, even more than I already was, let alone the extremely dry air. Yes, I have also come to appreciate humidity in the air. It's nicer to my skin.
Speaking of my skin another thing I've noticed over the last couple of years is how much drier my skin is getting as I age into my 40s. Even with regular moisturizing, my skin gets some seriously dry patches, which make the fine lines look much worse than they are or maybe than they should be. Eh, 6 to one... Thanks to my sensitive, eczema prone skin I have to be very careful what moisturizing products I use. Typically I stick w coconut oil & Cetaphil or Vanicream, for extremely dry patches I break out the Aquaphor. Not really recommended as it isn't non-comedogenic but when the patches are prone to cracking, & since I've never really had much acne to worry about, I go with the big guns for my dry skin.
Stuff I've noticed in general...I feel really great emotionally. I feel at peace with myself. Something I haven't felt in a long time. I feel at peace with God. He & I have had some very deep talks over the last few years. Mostly me begging him to give me a break. And him telling me to be patient & look for the lesson. Psshhh...whatever! ;) Him telling me I'm doing okay & to keep up my sense of humour. Which I am always happy to maintain. Nothing I like more than laughing. And taking off my bra at the end of the day. Seriously.
Now for one blip on the happiness radar...
Liam managed to catch a cold just in time for Christmas. I scrambled out his machinery for extra treatments & we went into overdrive on pushing fluids through his Mini-One button, rather than by mouth. Over the Christmas weekend, his sinuses just kept filling w fluid which irritated the telangiectasias (spider veins) in his nostrils causing lots of bleeding & blood clots. I went to help him get up on Christmas morning for presents & walked into a murder scene. Apparently, he had, had a violent sneeze about an hour before I came in & in the darkened room didn't notice that he splattered 2 square feet of his wall next to the bed. I turned the light on & my eyes went wide as I took a serious look at him to make sure he was okay. Once I assured myself he was fine I asked him if he sneezed, which he confirmed. When he asked how I knew I pointed out the wall & his shirt. He looked down & then at the wall & said, "Oh I didn't see that before!" I asked him if he was sure he sneezed or if I needed to call the police to arrest him for murder? He smiled & I told him, I felt like I needed to draw a chalk outline on the wall to go with the bloody sneeze. He chuckled. As I was cleaning it & him up and was pulling chunks of blood clots off the wall, I asked him to check & make sure all his brains were still inside his head, as I was sure some of what I was cleaning was brain matter. He started laughing and then started to cough really hard. I explained it wasn't that funny & started a breathing treatment. We went through 4 shirts, & 2-bed sheet changes in 36 hours because of the bloody noses/sneezes.
Tuesday morning I scheduled him an appt w the pediatrician to make sure nothing was infected & to make sure it wasn't turning into pneumonia. No infections, thank goodness, but she confirmed that his head was filled w fluid in both ears & his sinuses. While he did have a wet cough it wasn't affecting his oxygen sats too much, yet. He was saturating at 96%. But because of his propensity to turn infectious, he was prescribed augmentin twice a day on top of his azithromycin that he already takes prophylactically three times a week for inflammation. And told to keep up the breathing treatments every 4 hours. With the exception of the cough assist machine as the pressure of the air being pushed & pulled through his mouth & nostrils makes the nose bleeds so much worse. They also suggested I use Afrin nasal spray to help with the severe congestion in his sinuses, plus it might help w constricting the blood vessels thereby lessening the frequency &/or the strength of the nosebleeds. I was also told if he isn't showing improvement by this morning to call & get him back into their office, which was only opened 1/2 day today & would be closed on Monday (New Year's Day). As of this morning, he hasn't had a bloody sneeze in almost 12 hours. As of writing this, it has been 24 hours with no bad bloody noses. Just a couple of small ones that were easily stopped. He is still congested & his cough has gotten thicker sounding but he is still getting stuff up & it is clear & no still no fever so I am considering him slightly improved. If he gets even a little bit worse over the weekend I will be calling the special needs after-hours clinic at Children's Hospital in Milwaukee. Fingers crossed, prayers said, knocking on wood, wishing on a rabbit's foot, nothing further is needed. We've officially gone over 2 years since our last ICU/Hospital stay. Shooting for over 3 years.
*Health Update* 1/1/18:
Just a quick update on Liam's health... As some of you know he came down with a head cold on Christmas Eve. His sinuses were terribly congested. After a visit to the pediatrician on Tuesday last week he was put on Augmentin, in addition to the Azithromycin, he is on 3 times a week prophylactically. And has been receiving breathing treatments every 4 hours during the day to help keep his lungs from filling like his sinuses. While the sinuses are better, he's still battling a stuffy nose & some nose bleeds...they are better but still there. And now he is coughing more & more...his reactive airway disease is starting to kick in...so he's having a harder time with his lungs. We'll be calling the dr again tomorrow morning...depending on that visit will decide if he is getting better or if we need to start him on steroids for the R.A.D. But CA is better, Nolan started round 2 today...mostly coughing. And I woke up several times last night coughing & am sick of being sick & it hasn't even been 24 hours.
I'm such a baby. Other than sickness, it was a nice quiet New Year's Eve. And we are very grateful for the time to be together as a family, even a sick family! We are so blessed! Sending love & well wishes to all of you!
In other news...Other PROFOUNDLY EXCITING news! I just received an email from the A-T Children's Project founder... I am including a picture of the email & let you digest the extraordinarily awesome news...
What does this mean for Liam? He's 16 after all...he's got too much brain cell death. With this cure for the younger comes a tremendous leap forward to a cure for Liam as well. They cannot, as yet, reverse the brain cell death he has already experienced but this gives him a long life, a long healthy life. And with a long healthy life, there is a greater chance that someone will figure out a way to reverse cell death or replace brain cells or train existing brain cells to give him a chance to walk again. To be physically whole. This is staggering news! And I cried as I read the email. But the ATCP needs my help & YOUR help in order to help AT kids. $1.4 million is a lot of money. Please donate to the ATCP & be the difference in Liam's life & the lives of other A-T kids.
Wishing you & yours a safe, healthy, warm, love filled New Year! Never have I had so much hope & excitement for a year than I now have for this next year!
All my love,
Jess
As we are on Christmas break here & I am all caught up, for the minute, w my responsibilities, I thought I would take a minute to ponder the great wonders of the universe. Not really. Just passing on some things I've thought about or noticed lately. Nothing earth-shattering, nothing that will change the face of human existence or even everyday life that goes on in this house. Just "things".
For example; we moved here to Wisconsin July 1st, 2011. We've been here 6.5 years! That's a long time for us. Now granted we did move once we were here but only 10 minutes from our original rental house, that we lived in for just over 4 years. Needless to say, we have come to love this state & living in the country.
While pondering how long we've resided in this part of the country I noticed some other things. I no longer get super depressed in the winter like I did in the beginning. I do get frustrated w the mushy end of winter that leads into spring, but only because I get sick of cleaning floors from dog feet. So once the beginning of April through mid-May arrives, I get a little grouchy. But not sad or depressed. I revel in the snow & the cold. The lack of sunshine, that I grew accustomed to living in most of my life in Southern California & then in Phoenix doesn't bother me as it did in the beginning.
Another thing I noticed about the cold weather is the cold weather isn't that cold to me anymore. Well, unless it becomes sub-zero weather accompanied by large wind gusts. Those temps are meant for polar bears, not people. But I can handle the temps all the way down to the 20s without needing to cover myself in 5 layers. When we first moved to a colder clime I would wear; thick tights, jeans, a couple pairs of thick wool socks, snow boots (even when there was no snow -just cold temps), one of those huge jackets with extra layers inside, over top of a great big thick hoodie, w a thick scarf, thick gloves, & a big woollen hat. Basically, by the time I was done preparing myself to go outside, even for a short walk to my car & then into a store, I felt like Ralphie's kid brother Randy, who regularly screamed at his mom, "I can't put my arms down!" Not anymore. I have ditched the tights, down to regular socks & shoes, and only one level of my winter jacket. The scarf tends to make me feel like I'm suffocating, so I ditched it & the hat, but the hat went because I didn't enjoy having to keep the hat on once I arrived at my destination or everyone would see my horrendous hat hair. Once the temps hit 30-35 degrees I am in a hoodie only. By the time they climb back up to the fifties I'm wearing capris & no socks again. What does all of this mean? Not much, except that I've acclimated completely. As have CA & my kids...except Liam. He has never handled cold or hot temperatures well. He has a sensitive body system. If for some weird reason we had to move back to Phoenix I would be miserable in the heat, even more than I already was, let alone the extremely dry air. Yes, I have also come to appreciate humidity in the air. It's nicer to my skin.
Speaking of my skin another thing I've noticed over the last couple of years is how much drier my skin is getting as I age into my 40s. Even with regular moisturizing, my skin gets some seriously dry patches, which make the fine lines look much worse than they are or maybe than they should be. Eh, 6 to one... Thanks to my sensitive, eczema prone skin I have to be very careful what moisturizing products I use. Typically I stick w coconut oil & Cetaphil or Vanicream, for extremely dry patches I break out the Aquaphor. Not really recommended as it isn't non-comedogenic but when the patches are prone to cracking, & since I've never really had much acne to worry about, I go with the big guns for my dry skin.
Stuff I've noticed in general...I feel really great emotionally. I feel at peace with myself. Something I haven't felt in a long time. I feel at peace with God. He & I have had some very deep talks over the last few years. Mostly me begging him to give me a break. And him telling me to be patient & look for the lesson. Psshhh...whatever! ;) Him telling me I'm doing okay & to keep up my sense of humour. Which I am always happy to maintain. Nothing I like more than laughing. And taking off my bra at the end of the day. Seriously.
Now for one blip on the happiness radar...
Liam managed to catch a cold just in time for Christmas. I scrambled out his machinery for extra treatments & we went into overdrive on pushing fluids through his Mini-One button, rather than by mouth. Over the Christmas weekend, his sinuses just kept filling w fluid which irritated the telangiectasias (spider veins) in his nostrils causing lots of bleeding & blood clots. I went to help him get up on Christmas morning for presents & walked into a murder scene. Apparently, he had, had a violent sneeze about an hour before I came in & in the darkened room didn't notice that he splattered 2 square feet of his wall next to the bed. I turned the light on & my eyes went wide as I took a serious look at him to make sure he was okay. Once I assured myself he was fine I asked him if he sneezed, which he confirmed. When he asked how I knew I pointed out the wall & his shirt. He looked down & then at the wall & said, "Oh I didn't see that before!" I asked him if he was sure he sneezed or if I needed to call the police to arrest him for murder? He smiled & I told him, I felt like I needed to draw a chalk outline on the wall to go with the bloody sneeze. He chuckled. As I was cleaning it & him up and was pulling chunks of blood clots off the wall, I asked him to check & make sure all his brains were still inside his head, as I was sure some of what I was cleaning was brain matter. He started laughing and then started to cough really hard. I explained it wasn't that funny & started a breathing treatment. We went through 4 shirts, & 2-bed sheet changes in 36 hours because of the bloody noses/sneezes.
Tuesday morning I scheduled him an appt w the pediatrician to make sure nothing was infected & to make sure it wasn't turning into pneumonia. No infections, thank goodness, but she confirmed that his head was filled w fluid in both ears & his sinuses. While he did have a wet cough it wasn't affecting his oxygen sats too much, yet. He was saturating at 96%. But because of his propensity to turn infectious, he was prescribed augmentin twice a day on top of his azithromycin that he already takes prophylactically three times a week for inflammation. And told to keep up the breathing treatments every 4 hours. With the exception of the cough assist machine as the pressure of the air being pushed & pulled through his mouth & nostrils makes the nose bleeds so much worse. They also suggested I use Afrin nasal spray to help with the severe congestion in his sinuses, plus it might help w constricting the blood vessels thereby lessening the frequency &/or the strength of the nosebleeds. I was also told if he isn't showing improvement by this morning to call & get him back into their office, which was only opened 1/2 day today & would be closed on Monday (New Year's Day). As of this morning, he hasn't had a bloody sneeze in almost 12 hours. As of writing this, it has been 24 hours with no bad bloody noses. Just a couple of small ones that were easily stopped. He is still congested & his cough has gotten thicker sounding but he is still getting stuff up & it is clear & no still no fever so I am considering him slightly improved. If he gets even a little bit worse over the weekend I will be calling the special needs after-hours clinic at Children's Hospital in Milwaukee. Fingers crossed, prayers said, knocking on wood, wishing on a rabbit's foot, nothing further is needed. We've officially gone over 2 years since our last ICU/Hospital stay. Shooting for over 3 years.
*Health Update* 1/1/18:
Just a quick update on Liam's health... As some of you know he came down with a head cold on Christmas Eve. His sinuses were terribly congested. After a visit to the pediatrician on Tuesday last week he was put on Augmentin, in addition to the Azithromycin, he is on 3 times a week prophylactically. And has been receiving breathing treatments every 4 hours during the day to help keep his lungs from filling like his sinuses. While the sinuses are better, he's still battling a stuffy nose & some nose bleeds...they are better but still there. And now he is coughing more & more...his reactive airway disease is starting to kick in...so he's having a harder time with his lungs. We'll be calling the dr again tomorrow morning...depending on that visit will decide if he is getting better or if we need to start him on steroids for the R.A.D. But CA is better, Nolan started round 2 today...mostly coughing. And I woke up several times last night coughing & am sick of being sick & it hasn't even been 24 hours.
I'm such a baby. Other than sickness, it was a nice quiet New Year's Eve. And we are very grateful for the time to be together as a family, even a sick family! We are so blessed! Sending love & well wishes to all of you!In other news...Other PROFOUNDLY EXCITING news! I just received an email from the A-T Children's Project founder... I am including a picture of the email & let you digest the extraordinarily awesome news...
What does this mean for Liam? He's 16 after all...he's got too much brain cell death. With this cure for the younger comes a tremendous leap forward to a cure for Liam as well. They cannot, as yet, reverse the brain cell death he has already experienced but this gives him a long life, a long healthy life. And with a long healthy life, there is a greater chance that someone will figure out a way to reverse cell death or replace brain cells or train existing brain cells to give him a chance to walk again. To be physically whole. This is staggering news! And I cried as I read the email. But the ATCP needs my help & YOUR help in order to help AT kids. $1.4 million is a lot of money. Please donate to the ATCP & be the difference in Liam's life & the lives of other A-T kids.
Wishing you & yours a safe, healthy, warm, love filled New Year! Never have I had so much hope & excitement for a year than I now have for this next year!
All my love,
Jess