Vindication Tastes Sweet

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.. 

-Ciao!

Happenings

We have officially moved. If you do not follow me on Facebook, then you most likely did not know. We moved into a 2 bedroom, 1.5 bath townhouse. It was not what we were looking for, but it was in a way perfect. The stairs might kill me in the end, but it is a great exercise I guess. We do have baby gates, three in fact. One at the top of the stairs, one at the bottom of the stairs and one to keep the munchkins out of the kitchen. Our new stove is gas, so the knobs for the stove are within Jeff’s reach, a definite no-no. Speaking of Jeff he will be three later this month! I can not believe that!! 

He is doing really wonderful in speech and is now saying momma consistently, which thrills this momma to no end! We are working on other words many times a week and he is learning at a fast pace! He has an occupational therapy eval coming up soon, so I am sure that will help too. He is not really doing well with all the changes that have happened as of late. Moving and new house. It has been rough on all of us especially him. 

Charlotte is doing fantastic too! She is learning to come down the stairs in a safe way. She has no issues getting up, but getting down is a problem for her. She has started using a fork sometimes. She has trouble but is getting the hang of it. 

M lost his job this past Wednesday. It has been hard on us having just moved and all, but we are surviving. He has applied for unemployment already and put some resumes in for a few jobs already. The story behind the termination is a stupid one, but for right now I can not get into that. 

We still need a few things for the house, like a storage thing for the kitchen for extra can goods and pans. I have a solution until we can find something that I like and we can afford. It will not be perfect but should help some. Another thing we need is a table to eat at. right now we are all sitting in the living room on the floor. I do have our first real adult dresser coming from Ikea, which we bought before the job thing. We got the kids their own beds, which are in the process of being put together. 

I have started a new business. I am now selling Pampered Chef. Which I love! The Facebook business page is here. My Pampered Chef website is here. I am doing my launch party now, so if you or anyone you know needs anything, let me know! Well, I am gonna go, so much to do today! 

-Ciao!

Crazy Times For Us

So, here we are at the end of our two-year lease where we live. It has not been all horribly bad even with the takeover by the people who threw us out of the first place. All in all, it has been pretty good. They have a great maintenance staff here and when you have an issue they are quick to fix it for you. The ACTUAL reason we are moving at the end of February is that they are raising the rent $250 a month because they renovated. That is way out of our price point. I have found two places, one we have an appointment on Monday to look at and I have to call the second place on Monday to see if we can go see it on Tuesday. One is here in Lexington, in fact, not far from where we live now. We were joking last night that we have lived in the same 5-mile radius since we moved here, this new place will fall into that. LOL.  The second one is in Georgetown, Ky. It is actually a bit closer to M’s work, so that is a plus. I am reserving my judgment until I see both places in person.

We have all been sick now for 4 weeks! Charlotte was at the ER on Wednesday because of wheezing, she has a nasty viral thing that will hang on for another week or two. Ugh. I am not sure I can hang on for another week or two! Jeff and M both also got this but M is back to normal and Jeff is almost back to normal. Charlotte and I are still sick for the most part, though. Charlotte goes to her doctor for a recheck on Monday after we look at the one apartment, so I am hoping that everything is still good. We shall see! 

Now, I have to pack this house up! I hate packing and unpacking! I am using this time though to go through stuff and get rid of stuff we no longer need or want, so hopefully when we move we move into the new place with less stuff!! We have also been looking at beds for Jeff (he sleeps with me in the bedroom currently, M sleeps in the living room with Charlotte) and a convertible crib for Charlotte. She is in that tough area of not really crib but too small for a toddler bed yet. Found a bed for Jeff that we all like, including Jeff and I told him that we would get special sheets and a comforter for his big-boy-bed. He was excited about that, he wants Micky Mouse Clubhouse sheets and I found the perfect set that includes a comforter. I will get a second set of sheets too to make life easy on me. We also found a nice crib for Charlotte with a mattress, and I looked at sheets for her too. So, we are planning on doing that after we move. We are thinking about getting a new bed for us as well if money permits. We shall see. 

I am excited to get into a new place with three bedrooms and 2 bathrooms!! It feels like a long road to get there, though. I am trying to make a plan, so that if the kitchen does not get unpacked the day of move in that we can have stuff we need. I told M that I wanted to pack a box that would not go on the truck with 1-2 cups for Jeff, Charlotte’s training cups and a couple of bottles, a couple of cups for us to use, forks and spoons for us, fork and spoon for Jeff and paper plates and plastic bowls. That way, we have something to drink out of, utensils to eat with and plates and bowls. Trying to not have to get so much plasticware. I think I have a bad full of plastic forks and stuff in the closet, I will have to see if so, I will throw a bunch of those in the box instead and then just take Jeff’s fork and spoon. 

On to some amazing news, Miss. Charlotte is cruising!! In case you have no idea what that is, it is pre-walking. She is using furniture and me to move from one place to another. She was not doing this a couple of weeks ago and I saw her do it on the couch and I was so happy! Now she is doing it a lot, which means that this momma will have her hands full soon!! She is getting so big and doing so well, even though we have not had any therapy in about four weeks because we have all been sick.

Jeff is doing well with his signing. I am hoping to get him into therapy this week, he got approved right in the middle of all the sickness! Ugh! It is almost over I hope. Life is still hard but some things are easier. I am still really tired but I think that is because I am still not feeling well. I have not been able to really run the business well because of this, but I do have a party scheduled for next Friday so hopefully that will help me out. 

Well, I think I am going to go for now. 

-Ciao!

Rough Ride

Life here has been really busy as of late. A lot of doctor appointments for Charlotte as later this month she will be turning a year old! Coming in the next week or two we have a major hearing test, an ear doctor appointment, physical therapy sessions, and then there are other doctor appointments in the beginning of next month because her birthday falls on Black Friday this year! 

Getting to this point has been a very long road. I honestly was not sure if we would ever get here. With so many different health concerns and doctors, I am very proud of where we are these days. She is finally making her own red blood cells, which means that the blood doctor appointments are being pushed out two months and not every month like we had been doing. Her heart doctor did not want to see her back for a year. If we can pass this hearing test coming up, hopefully, that doctor will not want to see her for a good while too! 

It has been a rough ride for us here. Jeff has no idea what has been going on just that something has been going on. It is difficult to explain all this to a two-year-old. He is still not really communicative, although he has started to say ‘Da’ and ‘Ma’. Which is great progress! I am hoping to get him in for an evaluation sometime this month  too. He will go to where Charlotte gets her physical therapy done. People ask me why he is not in daycare or in a tots program, well because he does not talk mainly. I think it would be beyond frustrating for those people and for him as well if no one knew what he needed. I just do not want to put him or them through that. 

Charlotte has come so far in a few months! She is doing so many things that she could not do before physical therapy. Now we have an appointment for First Steps to come in and give her some therapy here as well as going to physical therapy. Which I am sure can do nothing but help her! I am hoping to see her crawling soon. She has not mastered that quite yet and I can’t wait to see it happen. She is getting so big! We are giving her table food nowadays because she refuses to eat baby food and she is doing really well with that. She has three teeth in already and I am sure there are more trying to pop in soon! I am just in awe of my little girl. She has been through so much in her short little life and she is still her smiley self every day! I can learn a lot from her for sure. 

My business is doing well. It has been a struggle to get it started for sure. I had a goal of making $99 in October since I got a late start and I met that goal! So, for November I have a goal of $250 and I am working it! I love selling Origami Owl.I Have a facebook party already booked for this month and I am looking for more! So, if you know someone who wants to host send her my way! Oh and if you book with me before Nov. 18th I am throwing in a special free gift just for you! You can find more information here https://tawnyagardner.origamiowl.com 

Crazy House and Crazy Life

So lately we have had a flurry of doctor appointments for the baby because it is coming (way, way too fast I might add) up to her first birthday! Charlotte’s first birthday this year is on Black Friday ( yes, I think it is some kind of cosmic joke that this has happened to me). I look at her and see how far we have come in this almost year, but it has passed so quickly I often wonder where it went! I know that most parents will say that, but for us, it is especially true because we have literally spent more time with her doctors, specialists, and other medical professionals than we have with her at home. For quite a while we were at a doctor office every two weeks or so. It was exhausting and scary. I am not sure I can even put what it feels like into words so that others can really understand it. 

In this almost first year of life for Charlotte, I have had more people look at me like I have not fed my child than I would ever wish on anyone enemy or friend. The feeling when people in a position to make that kind of call and ruin your life when you are doing the best you can for your child is to be trite, scary. It gets so that going to the doctor made me cringe because I knew inevitably we would get around to her weight or lack of it. When they weighed her, I would see the recrimination in the eyes of the nurses, until I started going through all the health issues we had discovered. Then the recrimination quickly turned to pity. I never wanted pity. I never wanted any of this. All I wanted was a healthy child, which I had no control over. So, I had to learn to deal with all the scary stuff. The every two weeks of blood doctor appointments where they would stick my daughter multiple times because they would not listen to me when I told them that she had fragile veins and that they would blow out easily. At one point, trying to get a port for a blood transfusion in, it was 7 sticks in her body. All the while she was screaming. I wanted to snatch her up and leave, but I knew I could not, so I had to sit there and deal with it. 

Our life has been so very difficult and crazy (there is no other word to describe what we have been through as a family) When Charlotte was just a month old, she had her first two blood transfusions. She and I were in the PICU for four days so she could be treated for her blood disorder ( in basic terms her body was not making enough red blood cells to keep up with the ones that her body was destroying, which is why she had blood transfusions). Her core body temperature was also 95 degrees, which caused some concern as well. So, for four days I did not sleep much and she was tested, prodded, and looked at. All. the. time. The nurses and doctors were amazing. She had an echocardiogram done on her heart in which they found that her aortic valve was abnormal. The eventual diagnosis is that she has a bicuspid aortic valve, which means she will have to be watched her whole life. She will also have to be monitored her whole life because of the blood disorder as well. 

She is amazing. She is a fighter. She is my hero. My 10-month-old daughter has had 8 blood transfusions so far and she may need more in the future. Right now she is holding steady. She has begun to make her own red blood cells finally and that is a miracle for me. 

See, we also have a 2-year-old son, Jeff, who has never been sick outside of a two-day fever when he was teething. So the stark contrast between brother and sister is sometimes overwhelming for me. I know that this almost year has forced him in many ways to grow up more than any 2-year-old should have to. He does not understand that his sister is very sick or was. All he saw was she was getting all this attention. He now has a speech delay that we are currently trying to work through. I am going to get him evaluated in November. 

To say that M and I are exhausted is putting it mildly. Charlotte finally started sleeping through the night about 9-months-old, but it is not always the case. I have a wonderful husband who gets up with her when she wakes in the middle of the night. So, I can get sleep because I am a stay -at-home mom. I lucked out in so many ways with M. He is amazing and my rock. Our anniversary is coming up this month, we will have been married for 1 year. It is a hell of a first year of marriage let me tell you! 

We struggle so much every day. With normal stuff. Just getting food into the house mostly. See, we have tried to apply for help but apparently, we make too much money where we live now. We barely make it every month. Sometimes, we don’t and something has to give so we lose phone/the internet or electricity. It is hard. M’s family is amazing and they help us as much as humanly possible but they have trouble too. I am not saying this to gain pity or so people will feel bad for us, that is just how it is. I made myself a promise that when I started this blog that I would be honest and show good and bad here. 

Charlotte is doing amazing these days and we have come far! She is now a whopping 17 pounds and 25 and 3/4 inches long. She has recently moved up to her big girl car seat. She is going to physical therapy and learning to crawl. We are not there quite yet, but very soon!! I am so proud of her and us as a family. We have not given up. We keep moving forward no matter how hard things get. The picture below is where we came from. 

This is Charlotte under the lights after birth in the NICU

The picture below is where we are now.

This is Charlotte stretching in her bouncy seat. 

This cute boy is Jeff.

I love my family with all my heart. We have been through some rough times, but we are getting through them. If you have prayed for us or thought good thoughts for us, thank you. We appreciate it. We will definitely need more in the future. Well, it is lunch time and my boy is asking to be fed! Gotta run!

 

-Ciao~

Truly Chaos For the Moment

Okay, so let me start with current events, M has gone to National Guard training leaving me home with both kids… alone… yeah.  We had a hard day that first day he was gone (Aug. 6th.) but things got better the next few days until yesterday on the 10th. Then I had a mothering melt down literally. So many things at play yesterday. And then trying to get Jeff to sleep and the A/C quit. I called the after hours number because it was almost 11 pm and 80 in the house. They called back in like 5 minutes and were out here in about 15 minutes in the dark with a flashlight. It was fixed by the time he left at 1 am. Laid down, Jeff decided to almost roll off the bed at about 2 am and when I moved him he started screaming and woke Charlotte up. Gah! So, I got up and made her a bottle brought him up on my lap and rocked him back to sleep, it is now almost 3am. I laid him back in bed turned on Daniel Tiger’s Neighborhood (Thank God for Amazon Prime!) and told Jeff I would be in as soon as I could be.

Went back out and tried to get Charlotte back to sleep, which did not occur until about 4am. She was rolling over in her bouncy seat (her new trick) every five minutes and I had to flip her back over like a pancake because she would start screaming! On and on.. Finally in bed at 4ish am and then Charlotte wakes up at 7 am and did not go back to sleep until almost 9 am in which case Jeff was already up. So this momma got 3 hours of sleep and I have no idea how I am even still upright at this point, I am praying that they both decide to take naps today cause I could sure use one!

Something I have not really talked about here is my adoption journey. Before I had Charlotte M got me a Ancestry DNA kit because I was wondering what ethnicity I was. I wanted to be able to tell the kids what I was, so they had the whole picture. Well, that actually put me in touch with a biological cousin and her family. It looks so strange to me to even type the preceding sentence at all. She has been helping me track down my biological parents because I am a huge mystery in the family as it were. So, for all of you keeping score, in my adopted family I am the black sheep and in the biological family I am a mystery! LOL. She has gone through and compared my DNA, her DNA, and her sister’s DNA line by line.

We have narrowed it down to about three people who were in the right area at the right time, now we are looking for records to back it up. So, I have been on a mission most of this week and on the phone a lot! A roller coaster of emotion does not even really begin to cover it. Some of the original information that I was given back in the 1990’s turned out to be totally false and I am wondering why someone who did not know me from Adam would tell me such a lie. Anywhoo, I digress… I was told that my adoption records were destroyed in a fire at the Children’s Services building. The only thing wrong with that information is that fire happened in 1907. Yea, nothing to do with me or my records. So, a wall of sorts, but good news is that my records exist someplace!

Called the heath department and a very nice lady directed me to another health department in the capital of Ohio, called there and got a guy who sounded really unhappy with his job choice (my inference, he did not tell me that) he directed me to a web page with information on how I could get copies of all the paperwork in my adoption file. So, I have an answer and a way to get the information that I need. I am overwhelmed because I am doing this all on my own right now and I have to be the only parent to the kids at the same time. Needless to say my mind is in other places and that is where the trouble starts.

We are having a better day today. We have the living room almost totally cleaned up. Jeff has been a huge help with that! I am so tired. So, I have been through the ringer since Monday basically and it is only Thursday and M is not back for another whole week!! Life is crazy right now and I am on a roller coaster! I guess I can scream through the ride or throw my hands up and try to enjoy it…

-Ciao!

Update on Doctor Appointments

So Charlotte went to the hematology doctor on June 6th and we were at Lexington Hearing and Speech on the 7th. Her red blood cell count was 9.1 so we are holding off on the transfusion for now. She has to go back in 3 weeks for a blood check and a possible transfusion. We also have to go back to Lexington Hearing and Speech the week after to get Charlotte’s hearing aid and I have a neurology appointment on the same day at 2pm. I tried rescheduling and could not until August 30th and that is just way too long for me to wait.

The hearing aid we are getting for Charlotte is similar to the one in the picture, but not exact. That is the exact color I picked out and the plastic part that goes into her ear will be clear with hot pink and purple glitter. I picked the brightest colors that we do not have a lot of in the house. So if we drop it it will be easy to see.

July looks to be a horrendously busy month for us. I got Jeff into a program that will evaluate him for a speech issue at the end of June. I am so glad that the doctor at the hearing place gave me the number. I got a lot done today, I called insurance for some stuff, found the preferred drug list for my plan and downloaded it so I can print it out to look at it. I also am getting myself a case manager for my asthma and migraines.

Well, I need to run for a while, but I will add the latest photos of the kids. 

 

Another Update

I know I am terrible lately at keeping everyone updated and I apologize for that. Life has been crazy and busy! So last Monday M and I talked about applying for Food stamps again. If you are a long time reader of this blog you know the issues we have had in the past with this. He agreed and I went and applied online. Within 10 minutes the guy called for the interview. By the end of that phone call we  had food stamps for Feb ( what is left of it anyway) and March. Which is helpful. I have to do a second interview and get the paperwork done then we will get food stamps for the rest of the year possibly. Keep your fingers crossed for us!

Charlotte has back to back doctor appointments tomorrow with the NICU grad clinic and the hematologist.  I am thinking she will need another transfusion tomorrow or sometime this week. WIC appointment is on Tuesday for us as well, so this will be a busy week!

M went back to Drill in Feb for the first time since surgery. He did well. So did we because it was our (the kids and I) first time all of us home all day with out him. His next Drill is beginning of March. He is doing so well with physical therapy.

Well, I am going to run, I am tired and I need a nap.

-Ciao!

A Crazy Week!

I know I have not been here much lately, I will tell you why. Charlotte was in the hospital. She was admitted on Monday and we got home Thursday night. She has the blood disorder I have and her red cell count dropped to 6. It is supposed to be 10 or more. She lost a lot of weight and the doctor was really worried about it. She was sent to the hospital immediately.

While in the hospital she received two blood transfusions and that helped a great deal. She is still on high calorie formula so she can rapidly gain weight because she is underweight right now. I was so worried I could not think straight. I had my lap top but I had to process what exactly was happening with us. She now has hematology appointments and on the 3rd she has her hearing appointment as well. Monday she goes to the pediatrician. So, this is about to get so busy. We are hoping to keep her red cell count  up, by herself. However, if she can not then she will need more blood transfusions. The hematologist will not even think about removing her spleen until she is at least three years old.

She still has her heart murmur and that appointment is in March. We will be at the hematologist every week for a while so they can monitor her. When we left the hospital her red cell count was 10.5, which is where it should be. We will test her on Wednesday to see how far if any it has fallen so we can see the rate that the red cells are being destroyed.

I am exhausted and still worried, but she has some really great medical professionals in her corner. I will try and get here to update on Wednesday after all the appointments have been done.

I need to run, it is time for her to eat!

-Ciao!

Doctors Doctors Everywhere!

Yesterday was my doctor appointment for my monthly check up to make sure everything is fine and the dreaded sugar test. I got there early like we always do when riding the bus and I sat and waited and waited and waited. My doctor was running late, which I understood so I waited patiently because honestly what good does it do for me to get upset? It just makes me and the baby out of sorts, so all the nurses were thanking me for being patient. LOL.

I had to drink 10 ounces of this glucose stuff and sit for another hour so they can take blood and if it was high then I would have to do another 3 hour test. For me, I have never had to do the 3 hour test, ever. I did not plan on having to do it this time either. LOL. Their blood pressure machine hates me. It never works right with me. So, I had to have my blood pressure taken 3 times and it was still kind of high. I told them that I was stressed about the sugar test because it always makes me feel terrible!

You can’t eat or drink anything for at least 2 hours before and of course the hour you are waiting on your blood to be taken. I stopped all eating and drinking a bit before noon and my appointment was supposed to be at 2:45 pm, but I did not get taken back until almost 3:30 pm. So yeah. I was a  hot pregnant mess after. LOL. M went to the closest gas station and got me a couple of bottles of cold water which helps right after. It flushes the sugar through the system quicker, at least in my case.

I have another appointment at the end of September, actually the same day as Jeff’s but earlier. In October I have to see an orthopedic doctor for my knee because at the beginning of August, I thought I just tweaked it a bit, but it has not gotten better, in fact it has gotten worse pain wise. So to be on the safe side, they made me an appointment to get it checked. M’s surgery is in 13 days if Amazon can get off their butts and get the paper work done.. If not and we have to reschedule, it might have to wait until after the baby is born.

Of course M has all the pre surgery appointments on September 8th and I am supposed to have my ultrasound done on the 21st too. I am thinking I might have to reschedule that because he would have just had surgery the week before that and might not be up to going anywhere or doing anything.

Oh, did I mention that I managed to schedule 2 appointments on the exact same day for the exact same time?!? Yep! I sure did! WIC and my doctor appointment yesterday. I am so glad that WIC called Friday to remind me of that appointment, so I rescheduled it for Sept. 10th. Then after I scheduled it, I got off the phone and could not remember when it was!! Baby brain strikes again!! So, I called this morning to find out and actually wrote it down this time and put it on the calendar. I also had to reschedule the ortho appointment for me because they had originally scheduled it for the day after M’s knee surgery at 8:15 AM! Are you KIDDING me?!?! Um, no.

The baby is doing well, and I have lost another 3 pounds between visits. Which honestly is a good thing. I am almost back down to the weight when I went in for the first appointment. I wish it was me doing this, but the baby sometimes, okay most of the time does not let me eat much. I think I have gotten to eat maybe 3-4 whole dinners in the month of August with out her pitching a fit! If I had been in shape and weighing what I was supposed to weigh in the beginning, this might be cause for concern, but since I started over weight, it is okay. Her heart rate was 135, which is perfect. She is the right size and all too.. so that is good news!

M’s parents will be here in October and we are excited!! Starting to count down the days! Of course I am wishing for fall weather now.. it would be nice.. but it still feels like summer here for now. Ugh. Well, I am tired and Jeff is kind of out of sorts today.. So I have to run!

-Ciao!