Pinktober

Breast cancer awareness has always had a very big part of my heart. Most of you know that many women in my family have had breast cancer and my cousin passed away not long ago after fighting for nearly 10 years. My dad passed away only about 5 months after her and they were super close, possibly even closer than he and I were. Anyways, it's reassuring to know they are together now knowing how close they were. I guess since having Kaleb things have been so hectic with appointments and other things going on that I even forgot about Pink Friday-- gasp! Normally I deck out in pink and spread the awareness on that day but somehow completely missed that train. Where was I? Not a clue!

Time for a dumb question. Because of my family history of breast cancer, especially being that it's only affected my dad's side of the family (that I know of) I have a much higher risk than most women so apparently I need to start mammograms soon, around age 30 I think. Now do you go through your family doctor or your OB/GYN? Told you, totally dumb question.

Oh How Pinteresting Wednesday

The "pins" I love today. 

And finally...my FAVE of the day. 

I really need to post this on my fridge. I love my little men. I need to keep all of these in mind. I think I do a pretty good job of it but these are hard for all mommies. I did let Nolan paint pumpkins last night. Talk about a total mess and the fact that my wood dining table may have yellow, black, and orange paint on it forever doesn't bother me. It did at first but oh well...it's a table. It will always remind me of the night we painted pumpkins for the first time. BTW, Nolan's favorite color is black. He's a dark little thing! 

The Little Johnstons

Updates on the little men in my life....

Nolan
- is driving me crazy with coming out of his room after he goes to sleep and then waking up super early and waking us up. this morning i think it was around 4am. we heard Nolan crying so Dennis checked on him and then we slept some more and I didn't know where Nolan was so I had Dennis check on him again and he found a bloody crime scene of the food kind. Nolan has recently become obsessed with strawberry milk so this morning he somehow got the Strawberry syrup out of the fridge (it was up high for a reason) and painted my kitchen with it apparently. Dennis wouldn't tell me the extent of things because he was sure I would be livid with Nolan and then maybe cry over my precious kitchen. I'm still finding pink spots on my carpet and tile floor, counter tops, and stove and sink. Of course we are out of carpet cleaner.
- is speaking more and more and putting words together. We've been worried about his speech because he really doesn't talk much at all but a lot of people have said that is okay and he will catch up so I went with it. Within the past couple days there have been small improvements, like from "i mommy" to "i want mommy". And, he is still obsessed with the phrase "go away"...this morning I woke up to him actually singing a song he made up..."go away go away go away go away" it was a beautiful rhythm even if it was rude.
- he still adores his brother. he helps change his diaper now. he wipes Kaleb's mouth when he spits up. When Kaleb cries Nolan goes over to him, rubs his head, says "shhhh, it's okay baby", and then kisses him. SO SWEET! No matter how many people talked shit about me having kids so close together this makes it all alright.
- He is addicted to pancakes.
- He has to do everything himself. "ME DO IT!"
- He makes us watch the movie Monsters every night before bed. Dennis and I now know every line by heart. I wish they would make a sequel or sequels because that would at least give us some variation.


Kaleb
- He is starting water therapy next week, YAY!
- He is still spitting up like a newborn and a lot worse. I hate reflux.
- He still goes to PT and OT once a week and his therapists are lovely ladies!
- He has developed seperation anxiety which is new to me. Nolan never really went through that phase and it was nice to not have to deal with it. But now Kaleb only wants mommy or daddy, and really he prefers daddy. Even if you walk out of site to go into another room he acts like the world is ending and screams like he is in so much pain. He's pretty dramatic.
- He has found a love for rings. Rings of any kind. Anything with a loop. I guess it makes it easier for his hands to pick up. I recently bought him a raspberry teeth pacifier and OMG that's his new love (unless you put him down with it and walk away...because then the world ends remember?).
- He loves all baby food. I think he might be a food addict.

Strength

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' 

-Eleanore Roosevelt-

I've been thinking a lot about strength lately. It's interesting to me that when you go through very difficult times that people call you strong, when in reality you are just surviving. It's hard to explain unless you have been through some terrible...TERRIBLE event in your life. I remember when I was 21 weeks pregnant with Kaleb and I lost all hope. The specialists said that he would not live and I was terrified that if he did he would be disabled for his entire life. I can't believe how immature, dumb, and naive I was at that time. After we received the news that Kaleb had Trisomy 9 we were devasted. People always told us how strong and amazing we were but we felt everything but those things. I think we laid in bed for the first week. Just laid there. We were so tired but it was so hard to even close our eyes. So many times I asked myself if this was happening, was this really happening to me? I guess I thought I was untouchable at that point in my life. When we had to leave the house for blood work or other labs we would go to Sonic which was our "sorrow food".

I tried telling those close to me that I was not strong...not at all. I was living (although barely). My only option was to continue moving forward. I couldn't erase time, I couldn't take away the extra chromosome that my son had, all I could do was keep breathing. I did what any parent would do in a time of crisis. You try to make the best of that situation and if you can't you just breath. Time will pass...situations will not get any easier but you will learn coping strategies so that it is easier on you. 

I wouldn't change a thing about my life and Kaleb. When I was pregnant I was terrified...what will other kids say about him? how will Nolan be affected by a special needs siblings? Will he ever be able to be independent?  I don't worry about those things anymore. Screw the other kids. And Nolan is absolutely in love with his brother and so protective of him at school. Even if he is not independent I will be there to make sure he is safe and happy. 

I've said it so many times before but Kaleb has taught me so much about life. Kaleb is such a special part of my life and he reminds me on a daily basis how amazing he is. I can't believe I almost let the "specialists" tell me how terrible the situation was and that aborting my baby was an option. You make your own life, destiny, future. I am so glad that my future includes a special baby boy named Kaleb. I love that little boy, along with his brother and their daddy. 

Kaleb's Angel

I'm writing this post about amazing parents that I met yesterday. I look up to them and learn from them and grieve for them. They are Jeannette and Steven Adamyk. I believe I started talking to Jeannette when Kaleb was around 5ish months old through a Trisomy group on Facebook. She also had a son named Caleb who was born with a Trisomy (T18, Edwards Syndrome). I found out that she lived close to me and I knew she could help me on my own Trisomy journey. Since Kaleb was born I feel that all Trisomies are the same regardless of the name given to them or the chromosome number they represent because to me "trisomy" is just a name for many different medical and development issues that a child with Trisomy has. I do know that Trisomy 18 is one of the scariest and for a short time was told that was most likely what Kaleb had and that I should think about terminating my pregnancy because those children are "not compatible with life". Jeannette has spent so much time and research to show doctors and others that work with our children that having Trisomy 18 or any Trisomy is not something that automatically means that our children will pass away right after birth. I admire her and respect her. She recently lost her wonderful son, his third birthday was coming up. Caleb means so much to so many people and shows the "medical professionals" that they should not be labeling these babies as "not compatible with life".

What does that mean anyway? The phrase just pisses me off to no end.

I can't imagine what she and her family are going through right now but she has given me so much hope and comfort whether she knows it or not. When I first spoke with her on the phone months ago it felt so nice to hear someone talk about the same problems in the government that I had dealt with as well when Kaleb was born, especially when it comes to disability benefits for our children and the fact that we can't get those unless we quit our jobs and live off of the government, which to some of us is not an option.

I am behind Jeanette 100% and plan to write an information letter about Kaleb to send with Jeannette when she goes to our capital in October to speak about the additional help our children need and they are not currently getting.

 Me and Jeannette

Kaleb and Jeannette sharing a moment

Such a happy little boy, Caleb <3

Surgery, Trisomy, and Sadness

Kaleb had his last surgery on his feet on August 24th. The surgery went really well and only took about 10 minutes. They were only taking his cast from his first surgery off and putting another one on. Kaleb didn't even need to be intubated, only gas. I was so proud of him! Yesterday was two weeks later and Dennis and I went to his Orthopedics's office to get his cast off, for one last time. No more casts in the future (at least at this point) and I was so excited to see his "new" foot!

We realized recently that Kaleb has had casts on both feet or one foot for the past 6 months of his life, he is only 8 months now. Wow. I haven't been able to bath my baby or swim with my baby...and my baby LOVES the water. Most of the casts were on both feet however he only had a dislocation in his right foot. The medical terms for his feet deformities is "Congenital Vertical Talus"...which for some reason I only started researching TODAY and found that it is so rare that only 273 cases of been reported. Anyways, towards the end, before his first surgery he only had his right leg casted due to the dislocation. The first surgery went well and he was a total trooper. My little hero! All of this time I've falsely been hoping that the casting and surgery would just fix everything and make his feet "normal" (damn...I hate that word). When his cast came off yesterday I basically saw the same foot that I saw before the casts went on. Yes, it looked better....if that's what you want to call it. But it still wasn't right. I couldn't imagine how anyone could walk on those feet and it brought me right back to my pregnancy and Kaleb's birth. Everything was so uncertain. I try to stay positive because I just don't know and although we have an amazing very well known Ortho doctor in Orlando, I still question what he says. I asked him how Kaleb would be able to walk, especially since his left foot probably won't be getting a brace later on and only his right foot wood. His response was that he would learn to balance on it. That's great and all but that's not what I wanted to hear. I wanted to hear that he would walk without a limp, run in PE class, and do all of the other things that most of us take for granted. It's hard to be reminded of the uncertainty of Kaleb's future. He is such a great baby, funny and happy and smiles all of the time (unless he's hungry, don't mess with him when he's hungry...he will eat you alive). But then I think about his future. Will kids make fun of him? Will he be able to be in soccer, hockey, football or whatever he wants to be in? Probably not.

I try to keep positive, I really do. Kaleb has already beat SO many odds and medical conditions have just randomly "healed themselves" and I am so proud of him for that. I'm not able to go to his OT and PT therapy for the most part due to my work schedule but I was able to go last week and I just cried (apparently I'm a cry baby). The smallest things he did were just so amazing to me. It was great to hear his therapists praise him for doing something like sitting for 10 seconds unassisted that most of us always took for granted with our children. One of the biggest things that reminded me that he is "delayed" was when his hands were always shut and he wouldn't grab for toys or bring them to his mouth. For some reason that was the first "delay" we dealt with and it hit me hard. The day he was able to grab at a toy and bring it to his mouth....OH MY GOD. You have no idea how that made me feel. It's as important as other children's crawling, first steps...etc.

Another milestone that I am happy to say Kaleb has gotten the hang of is going to sleep on his own. Normally we would swaddle him after his last bottle and then rock with him on the couch for him to go to bed. But started the past few days we can just put him in his crib and he will go to sleep for the night and sleep around 10 hours. I was always so lucky to have Nolan who was such a great sleeper that is was amazing when Kaleb started sleeping through the night around a few months old and now for him to just put himself to sleep is amazing. He is such a wonderful little boy, my hero, and completely protected by his older brother. He has taught me so much about myself, life, and people and is determined to "show" the doctors how great he can be.

And...I'm Back!

It's been nearly two months since I've posted on here. I've tried...I really have. I did blog posts in the car while driving to Texas about our road trip but I couldn't get them to update from my phone. Other than that we have been overly busy.

We had a great time in Texas. Dennis' family was great, Nolan had a birthday party, we saw old friends, went shopping, ate at the wonderful restaurants that we unfortunately do not have here in Florida and went to my best friends beautiful wedding. Such a great time and I can't wait for our trip next year!

Nolan is officially two now and is in the 75th % for his height and weight. Phew. I was worried that he was really small because he never eats, unless of course he finds a piece of bread or some type of cheese. At his two year old appointment the doctor could see that he still has pretty bad excema and said that most likely he will have it for the rest of his life. I just wish it wasn't on his cheeks...we can deal with the back but the flare ups on the cheeks are terrible. We have so many damn bottles of creams, lotions, oils and nothing seems to work on his. She gave us a prescription for some oil so hopefully that will give him some relief. Nolan is talking up a storm. He recently taught his entire classroom the saying, "Go away". So much so, one of the mom's of another boy in his class asked the teachers where he learned the saying "go away". They told me they didn't have a clue. And then Nolan probably walked up to her and told her to go away. Nolan also says, love you, thank you, no thank you, night night, me go, me do, outside, inside, shoes, eye, baby, mommy (but not daddy somehow??), mimi (my mom), and much more.

Kaleb is now 7 months old. He is doing really well considering things doctors had told us to expect when we had him. He now only has one cast on his leg which I am so sick of. They have cancelled his surgery twice now and finally he should have surgery on Monday. He is actually going to have two surgeries at the same time with his Orthopedic doctor and his Ear, Nose, Throat doctor. He'll be getting his right foot pinned and the Achilles cut and hopefully won't need the left foot done as well. Then his ENT doctor will be putting a camera down his throat into his lungs, voice box, esophagus and other places to see if he has anything blocking his airway due to his severe sleep apnea and also check to see if his severe reflux has caused any damage to his throat. K's reflux has gotten so bad over the past two months. He will throw up stomach acid hours after eating. He even throws up vegetables and cereal that we recently started him on. I feel so bad for him. You can smell the stomach acid and I can only imagine how bad it hurts his little throat. Also, Kaleb now has his Star Band which is his helmet for his flat head (plagiocephaly). He is doing quite well getting around with a 1lb cast on his leg and a huge helmet. He rolls around, kicks, finally started somewhat grabbing at toys, he has brought toys to his mouth a few times, and he gets so happy when he is playing. He is getting behind in his development but we knew this would happen, it could always be worse. He is also small for his age and the doctor is monitoring it to see if he may need a feeding tube put in. I hope not. I realized that he was small for his age when we were in Texas and he turned 6 months old and I had bought him new 6 months onesies and when I put them on they were pretty darn big on him. At that point he would fit best in 3 month old clothes.

Well Kaleb is waking up and I need to finish cleaning up for pest control to get here. I hope everyone is doing well and I will work hard to keep this thing updated!