Lately it has felt like my life had descended into the depths of hell. In May our car was totaled by a drunk driver. Luckily no one was in it when it happened. We have dealing with this since then. Can’t really say much more about this right now.
The kids have been doing well. Jeff has been in summer school and of course loving it! He is learning so much. I am waiting on a call for his behavior therapy to start. Got through all the Alta stuff and they sent a referral to the insurance company, so they told me to get his primary care physician to send a referral to a place that takes the insurance. So many referrals!!! Got that done last Friday and now waiting to hear from them. I sometimes feel like all this back and forth stuff is the nineth circle of hell.
My mom and I have been talking about her coming out here for a visit maybe in October. Looking on Airbnb at places for her to stay. Hopefully will have the above incident taken care of or at least some of it anyway.
Charlotte is doing great with her therapy. She is getting her evaluation with the school district at the end of August. I can hardly believe that she will be three in November.
I started counselling again and it’s helped me so far. I like my therapist, so that helps. I am gonna run.
I know, witty title, right? Gotta give a girl a break, okay? I recently found out that I have sleep apnea. I will have to use a CPAP machine. For those who have no idea what this is, it is a machine that blows air into my lungs so that I do not stop breathing at night. I will pick my machine up on May 1st. At first, I was really reluctant about this. I never thought that I could or would have sleep apnea, but I did a sleep study at the beginning of March and let me tell you, the video that they show you with supposedly real people saying it was easy, they are lying. Lies all lies. One guy even said he slept better during his study than he does at home. LIES I say! The longer I have had to wait for the results, which happened in the beginning of April and now waiting to get approved for the machine, I have thought about this. Right now, my sleep is horrible. I mean I wake up so tired that I need a nap after I have been up for like two hours. Apparently, I stop breathing 30 times per hour and my oxygen saturation drops to 56%. Ya’all that is seriously and dangerously low. Your oxygen saturation should always be in the 90s. So, thinking about all of this, I decided that I am going to just suck it up and deal with it. I will use the machine. It will help me in the long run.
I was on a good run of not being sick, but I got sick this past Sunday. I had a doctor appointment that had been scheduled for Thursday, so I guess it was good timing? I am back on the steroid taper again, I feel that should be a song sung to the tune of ‘On the Road Again’. Someone make that happen. I am also hooked up with an app on my phone and sensors on my inhalers that show when I use them. Right now, it is only on my rescue inhaler because they changed the size of my Qvar inhaler and the sensor does not fit on it. I have been hitting that rescue inhaler like it is an oxygen mask this last week. My asthma doc will not be pleased. The app is through Propeller Health. If you have an asthma doc, ask about it. The sensors were free, you just have to sign up and download the app, sign in to the app and they send you your sensors. You can also track other meds you are taking for your asthma too. It is pretty cool because I was looking for something like this to help keep me on track.
I have a massive amount to do with Social Security. I have to call them Monday and see if I can make an appointment for it all. I feel like it might be a day trip or something. Ugh. I do not like spending time in places like that because if someone is sick there I will wind up with it. I can not wait any longer, so I just have to deal and get it all done. The beginning of May is looking like I am not gonna have much free time at all, which sucks. The first three days of the month are totally booked. I was able to move one May appointment to June, so there is that. I am really tired, so I am gonna run.
We got the flu at the beginning of January. Jeff was supposed to start school on the 10th which did not happen because of the aforementioned flu. Y’all, this flu thing is no joke. It is nasty and it hangs around for a long time. I was going to start Jeff in school on the 17th, but he was still having fevers, so we put it off another week. He did start on the 24th and he absolutely loves it! Which is a huge relief to us both. Of course next week he could totally hate it. Ya know, life with a toddler. I started him on a Wednesday because at his school Wednesdays are half days, so I figured it would be less traumatic for him that way. He had never really been away from us both at once before, so I was trying to ease him in.
Now he hates leaving school and this is his first weekend home since starting school. I am not sure how this will go because he loves school so much. Char asks about him randomly during the day when she realizes he is not there, but all in all, she is happy too because she gets to watch what she wants on the TV and gets all the adults to herself. Plus she gets to go more places too, so for her, it is excellent!
Actually, for us all, it has been excellent. I am so happy he is loving it. It makes therapy day so much easier! Plus he is meeting other kids and making friends and learning so much! The weather has not been wonderful lately, rain and cold. I do like that it gets plenty chilly here, I just occasionally miss the snow aspect. With the chilly weather though it is nice winter, just a lot of rain sometimes.
I am looking into getting Jeff some ABA behavioural therapy, which I feel would benefit him greatly. He is growing up so fast! I can not believe he will be four in March! I look at him sometimes and I just feel so sad because he is getting so big and soon will not fit on my lap anymore! Char had surgery yesterday. She had tubes put back in her ears and her adenoids removed. It was rather traumatic for her, but she is in good spirits today. Not quite herself yet, but getting there. She seemed to be a little bit warm today so we have been watching her. The nurses and doctor took great care of her and of course, everyone loved her! Well, I think that is all for now.
If things were not bad enough, this past Friday BOTH kids tested positive for the flu. Not only that but Jeff had been vomiting in the middle of the night when we started to give him some melatonin per his pediatrician. Mainly to help us get him on a schedule for school, which is all out the window now because I have to cancel every.single.appointment we all had this week so that I do not spread our flu germs to other people. I know, you are welcome. Jeff was due to start school on the 10th, which is now out the window. We had appointments every single day this week and now tomorrow I have to take time and call and reschedule everything. Char has had to go every single day and have blood drawn because of the fact she keeps running fevers. On Friday at the doctor’s she was 103. So, we had to drop Jeff and I at home, get Char comfortable, grab some things to keep her occupied and make her feel okay, then Mike had to take her to the ER. Someplace in there we are dinner. We were lucky that all the tests came back at or above her baselines, so she got to come home.
She has nasty bruises on her arms from getting blood drawn so much, so tomorrow morning I have to call the pediatrician and see if they can get her in, also beg them for no more blood until her poor arms heal because right now they are just hurting her over and over. Sigh. Both Mike and I are exhausted and sick too. I have to reschedule the sleep study. Ugh. I am so over this because I am tired and sick and all I wanna do is sleep. So, Mike and his mom are taking Char to see the hospital administrator so they can see what kind of shape her arms are in because the nurses do not want to listen to us when we tell them about her veins. She has small veins, to begin with, they are fragile, they roll, and they blow out so easily. It has been like this since she was born. We tell them, but then no one listens.
Jeff seems to be okay, he is the only one of us with any kind of energy. Hopefully, in a week or two we will be back to normal health-wise and be able to resume all activities. I am so tired so I leave you now.
I have always felt kind of left out on Christmas. I am adopted as most of you well know and I always struggled with the holidays. I always felt like a third wheel on a date. I know that my family never intended it that way and they never actively made me feel that way, but I always did. My cousin and her mom got along really well. When I was a kid, me and my mom, not so much. I am not airing family laundry here, everyone knows that my mom and I were better off far apart. Back to what I was saying, I always felt, I am not exactly sure how to put it in words, but the closest I can is left out. Everyone had family that they belonged to and I never really felt like I belonged to mine. Ever. I tried talking about this with the numerous counselors I went to as a kid, but no one ever helped me deal with that feeling. So, carrying this feeling into adulthood, made me kind of meh over the holidays. When my two older kids were little, I tried so hard. I would put up a tree and we would decorate. Put lights up around the house. Mostly because I wanted everything to be somewhat normal for them. I never really saw the point of it, but when I saw their smiling faces looking at the tree and all the lights, I went with it.
My kids now are young and they have no idea yet what Christmas is. This was the first year we had a tree. We are staying at the in-laws’ house so they put a tree up and lights and I saw those smiles and wonderment in the eyes again, so I know this was basically the last year that we can not do anything. So, here is to hope that this next year is a lot better than this one because honestly, I am not sure how much more we can take as a family.
This year Christmas was good for the kids, mostly because of my mom and the other family we have. I was so appreciative because the last few years have been horribly lean at Christmas. This year Charlotte got overwhelmed at how many gifts she had to open this year. It was a sight to behold. Jeff loved ripping the paper off and shredding the bows like any little boy would. We had a good time Christmas morning. It made my heart lighter like it used to with the older kids. Hope your Christmas was good. I need to go take some meds and lay down!
So, most of you know that I have been battling to get my son diagnosed properly. We had a blow to that process earlier this year, but that was trumped yesterday. I will take you behavioral psychologist and raise you a pediatric neurologist! I win! I know it seems petty, but when two (2) pediatricians with their own Autistic kids have BOTH said my son is Autistic and then this woman undoes all that with one report, it really irritated me. Especially when she notes some of his autistic behavior in said report, but no it is not Autism. It is Apraxia, something that honestly no one I have spoken to even knew about!
Well, all this changed yesterday with our trip to San Francisco. We went to see a pediatric neurologist for Jeff because of the diagnosis of Apraxia. Which he does not have. He is Autistic and meets the requirements for being diagnosed as such. So, today with a letter from this neurologist in hand, I called the school district to get the process started. He has an appointment at 3pm there to be evaluated.
Also, had to reschedule a WIC appointment because we were all so very ill and missed it. Which is that day but earlier. Charlotte starts her speech therapy on Monday and the Infant specialist is coming on Tuesday. Also, got her 2 years well check scheduled. Made a few other calls to get some information on help for a few things we need. Mike did well at his post office interview in West Sacremento today and now we are waiting on an email for him to get drug tested and his background check. We have to get Jeff some blood work done, some of it is genetic testing that is in depth so it will not be back for a couple of months. We are moving forward with all this stuff. Somedays I feel like I am standing in place though. I am so very tired and bone weary of most stuff going on.
I missed counseling for 2 weeks because we were really sick and go back on Monday afternoon. I am so looking forward to that! I need to get back on schedule for my meds too because of nausea I had stopped taking them, so now it is time to start again. Right now life is busy and overwhelming. I need to run..
It has been a while since I wrote here . Alot has gone on in the last few months and I am trying to wrap my head around it. I am so very tired these days because we all have been sick again. It is the fourth time this year already and I want to scream ! Charlotte has been doing well. Jeff is exploding with language. It seems there is a new word or phrase everyday!
yes I said phrase. he is finally putting words together. We ate so very proud of him. In October we have to take a trip to San Francisco to see a neurologist /apraxia specialist for him. Apraxia is where your brain does not communicate with your jaw muscles. some seem to think this is the only issue he has, which if it is true would be a blessing. however, I think it is more than that. So we will see.
at the moment I am writing this on my phone so sorry for the grammar mistakes. I need to run. Ciao !