Wednesday, June 30, 2010

So this is how it feels...

to have too much on your plate. Tomorrow is Jayden's EGD w/ biopsy. Saturday is my 6 yr wedding anniversary. Sunday is the 4th of July. Tuesday I have my outpatient sinus surgery. Next Saturday is my niece's 13th bday slumber party that I am giving her. In between all of that, Jayden has several doctor's appointments and so do I. And if that weren't enough, my aunt has been fighting terminal cancer for a few months now and is now dying. The doctor does not expect her to live through the night. The month hasn't even started yet and I'm so ready for it to be over already :(

Please keep my baby in your prayers and also my family, as they are having a hard time accepting my aunt's death.

Tuesday, June 29, 2010


Jayden and Alivia. Alivia is my sister's daugther. She is 3 months younger than Jayden. My sister and I were so excited when I adopted Jayden and we knew that our kids would be close in age. We just knew they would be the best of friends, just like we are. We were so hopeful. Unfortunately, it didn't start out that way. They did play well as infants, but as they grew older Jayden experienced developmental delays and behavior problems that affected his social skills. Due to his sensory seeking issues, he plays VERY rough. He doesn't know of another way to play although he has gotten so much better this year. He is also very uncoordinated, so playing games like tag are tough for him b/c he doesn't know how to run without running into people. And when he runs into other kids, it scares them. Alivia was scared of Jayden. She always thought that Jayden was trying to hurt her, so she stayed away from him. Whenever we would get them together to play, Livy would stand to the side and just watch. We would give Jayden reminders on playing gently and he would bring a toy to Alivia and she would run from him thinking he was coming to hit her with a toy. I don't know how it felt for my sister, but it hurt me to think that my niece was afraid of my son. I didn't like that she was afraid and couldn't enjoy herself when he was around, and I didn't like that he was misunderstood. Don't get me wrong, I know that Jayden will often be misunderstood b/c of his issues, but when I can, I want to help him be understood...especially when we are talking about family. At 3 yrs old, both kids are at the age where they can understand to a certain degree, so I had a good talk with Jayden the past few times he's been over to play with Livy or she's come over to play with him. I reminded him just before walking through the door that Livy does not wrestle and she does not like to play rough. He would say ok and I could actually see him attempting to play nice with Livy. Now, with Alivia, I knew it was more important to have a good talk with her to help ease her fears. I told her that Jayden does play rough and at times, he may scare her, but he truly doesn't mean it. She said "That's ok!" :) It's only been a few weeks and now they ask for each other. We all went out to diner last night and Livy came over to play for a few minutes before we went to the restaurant. They played with the play kitchen, taking turns cooking. Jayden gave Alivia his Ironman toy to play with (gasp!!). And at one point, he went to his toy box and wanted to show her his Buzz Lightyear toy...She happened to be standing right there when he grabbed the toy and slung it around very quickly and the plastic wing hit her on the head. She grabbed her head and said "Ouch" and her mom immediately told her "It's ok Livy he didn't mean it" and I immediately told Jayden to remember to be careful and that we should play with the stuffed Buzz instead of the plastic one so no one gets hurt. He is a rough guy, so we have soft toys for playdates ;) Jayden put Buzz away and then turned to Alivia and did the sign language for "sorry" and gave her a hug. Then off we went to dinner and they had a blast. They played in the waiting area and Alivia shared her HUGE imagination with Jayden. When dinner was over they didn't want to go their separate ways. Jayden actually woke up saying "Where Yeeyah??" :)I am so very proud of his progress and proud of my niece for actually overcoming her fear so quickly.

Monday, June 28, 2010

Blogger Blessings

I love blogs. These days, you can find a blog based on anything you come across in your life. I've found blogs on adoption. Blogs of moms with children who have Celiac. Blogs of moms with epileptic children. Blogs of photographers. Blogs of Stay at home moms. Blogs of moms with autistic kids. Blogs about going green. You name it, I bet you can find a blog on it.

I love blogging. I started back in 2006, just before we adopted Jayden. I used it as an online journal of sorts. I don't think I had many readers at all, but that wasn't important to me at the time. My main goal was to jot down things as they happened during our adoption process, so that I wouldn't forget them. Then when Jayden came home, I continued to use it as a journal. My few readers (as far as I knew) were my friends from the adoption forum. I loved having readers, but still, my main goal was to write down memories. By the time Jayden was a year old, we noticed behavior problems and developmental delays. Every Dr we saw, asked for a detailed history: when did he sleep through the night, when did he say his first word, take his first steps, answer to his name, etc. I didn't have to think long and hard on this b/c it was all on the blog. In fact, just by re reading the blog entries, I saw that Jayden presented several red flags for autism. I had no idea that everything I'd blogged about, just for memories, would serve as the greatest tool to get Jayden the help he needed. At that point, blogging took on a whole new meaning for me. Not only is it excellent for journal purposes, but the ability to reach out to those parents who, like me, searched and searched the internet for answers and only found the broad description of what "could" be wrong with their child. I would much rather hear from an actual person who has been there, done that. And I've found that in blogging.

Through my blog, I've met and actually become good friends with a few people who have found my blog. Many have similar situations and some just want to be there for support. I truly appreciate them! I know I've come across some bloggers who hesitate to put out too much personal information on the web about their child's condition. I can totally understand that b/c the web can be a scary place. At one point, I even took to censoring things I said about Jayden here on my blog, but then I didn't really like blogging as much. I feel that by being completely honest about Jayden's condition, I can possibly help other parents who find themselves in similar condition. And not only that...perhaps someone reading my blog could offer some life altering advice to ME for Jayden! It just recently happened for a fellow blogging friend of mine :)

Last week, Lyndsay shared on her blog some strange facial tics that her 2 yr old started having all of a sudden. She has been fighting for some time now to figure out why his asthma was so bad and not improving with medications. Her mommy instinct told her that there was a missing piece that the Drs weren't finding. She blogged about their rough days and through those posts, she had several people praying for her. Little did she know that she actually had someone searching the internet, on her behalf, to help her to help her baby! This person sent Lyndsay an email in the middle of the night with information that would essentially be the MISSING PIECE to her son's health issues! In less than 48 hours of receiving that email and following the advice given in the link, her son made a 100% recovery AT HOME! What a blessing!!

What I believe makes this so special is that Lyndsay didn't blog about the issues expecting someone to email her with a cure. I'm sure she blogged about it b/c it was heavy on her mind (who wants to watch their baby suffer??) and she wanted prayers and some support. But for someone to actually send her a cure?! That's a blessing!! And had she not been so honest with her son's health issues, it would have been a cure that was left under the covers, probably never to be found. I am so happy for Lyndsay and so thankful to the young lady who sent that information to her in her time of need.

This just goes to show you that you never know WHO is reading your blogs and exactly what their intentions are. I love my blog and appreciate all of my followers and readers, whoever they are. BLOGGING ROCKS!!

Saturday, June 26, 2010

Bad Blogger

Sigh. My goal was to update this blog a few times each week, if not everyday. Mainly because I use this as a journal to keep track of the things Jayden does to amaze me EVERYDAY. There are things that I never want to forget. There are also things that I would love to forget, yet because it is so significant (like the 60+ seizures he had in 2 days)I want to remember it. But, as usual, life got in the way. This month has been SUPER busy for us. Every week of June, either Jayden or myself has had a Drs appt or two (or three!). I tried to squeeze in swimming, gym time, my at home business, my photography, and even playgroup time (yeah that didn't work out so well when I read the dates wrong on the calendar and Jayden and I were the only ones at Chuck E Cheese at 9am!!). The entire month was just like a run on sentence. No end in sight. Also, I had the big 30th birthday. Party and all. It was lots of fun! A nice break from the hustle and bustle that is life. But after the party was over, it was time to head back into reality.

Jayden had a developmental followup the week before my birthday. It was a wonderful followup. The Dr recorded that Jayden has shown significant improvement in all areas of his development. Eye contact is perfect and his social anxiety seems to be a thing of the past. He interacted with the Dr and the resident. His attention span is still terribly short so that caused him to score quite low on the cognitive level and his speech scored at a 23 month old level, but he has improved so much that the Dr feels that the autism diagnosis is no longer warranted. She feels that his delays are largely due to the chromosome deletion which is known to cause global developmental delays, along with a host of other problems, which he does present with. She feels that with continued therapy services, and the care of a good neurologist and GI for his Epilepsy and Celiac, he will be just fine!

On this past Tuesday, he had a followup with his GI Dr. Just to show you how jam packed our month was, I had NO IDEA he had a followup with his GI this month. When I got the recorded message that he had an appt, I had to call back and ask them WHO he had an appt with! Unfortunately, this appt didn't go as well as the appt the week before had gone. As you know, when Jayden was hospitalized in April for his seizures, he'd lost 6lbs. He went from 35lbs to 29lbs and this was in the beginning of April. The GI doc was very concerned with this b/c of his celiac and b/c he does not have the best appetite at all. By the time we went to see her for a followup in May and to see the dietitian, he was up to 33lbs, but she still was not happy with that so the dietitian had us to start giving him pediasure and gave me a list of fatty foods to feed him. He's been drinking the pediasure just fine and I've been adding chocolate syrup to it. However, his appetite is still just not there. Getting him to take more than 3 bites of baked beans in a 24 hour period is a struggle. So when he went in on Tuesday (6 week followup), he still weighed in at 33lbs. The Dr said he had only gained an ounce and there's the possibility that he actually lost some weight depending on what he was wearing. She was expecting him to at least be back at 35lbs after the 6 weeks of increased calories (and I have been pushing and counting calories). He was also in tears and bent over, crying in pain during the appt, so she's concerned about his stomach. He will be having an EGD w/ biopsy done soon. She wants to check the condition of his intestines and his esophagus. Jayden is NOT underweight. The concern lies in the fact that he has lost a significant amount of weight and he cannot gain it back. Celiac Disease and weight loss (in a toddler) is not a good thing, so she just needs to have a closer look. I hate to have him put under anesthesia again, as I can still clearly remember how hard it was for me to watch him struggle until he went under the last time :( But, like every other mother, I hate to see him suffer everyday. I want him to know what it's like to have a tummy that does not hurt everyday. He deserves it.

And I will end this post with some really good news! You know the language explosion that many moms say happens around 18-20 months of age? Well it looks like it finally found it's way to our residence! We've been waiting nearly 2 yrs for this moment! A few weeks ago, Jayden was in his booster seat and was ready to get down, so he started to yell "DOWN DOWN!" like he usually does. Before I could get to him he closed his eyes tight, as if to concentrate, and then he opened them and said "Mommeeeee, I DOWN!!" Mike and I just looked at each other. And the phrases have been coming ever since, out of nowhere. Last week we were driving to my aunts house and we stopped at a red light and Jayden said "Mommeeee, I want to watch a movie." Again, Mike and I just looked at each other. The other day at the hotel, Jayden got off the elevator and there was a lady waiting to get on and Jayden looked up at her and said "How you do-eeen?" and the lady replied "I'm fine sweetie!" OMG. Other things he has said to shock us..."Mommy, I hot!" "I don't want to do it!" "What you do-een?" "Where we go-een?" and this one we really couldn't believe "Mommy, I hungry!!" Don't get me wrong, the phrases are little gems that he presents us with rarely, but everyday which is BIG for him. He still does ALOT of meaningFUL (it means alot to me!) gibberish, but he is trying. Every mom I've come across who knows about Jayden's speech delay would tell me "Don't rush it because once he starts talking you will want him to be quiet." I know it's just their way of making me feel okay about the situation, but I am happy to kindly say that they were WRONG! In fact, when Jayden talks, I drop whatever it is that I am doing and I answer his questions over and over and I encourage him to continue. The fact of the matter is that when my baby talks, I never want it to end :)

Monday, June 14, 2010

Pain in the neck!!

So sorry that I haven't been updating the blog as well lately! The past few weeks have been a whirlwind. Between my photography and my new home business picking up, and Drs appts for both myself and Jayden, it has been crazy!! Despite how busy our schedule has been, I'm so glad I took the time out to see the Dr and stopped ignoring my pains.

First off, I was sent to an ENT a few months ago for chronic sinus infections and migraines. I wasn't surprised when the Dr gasped at the size of my sinuses and couldn't understand how I could actually breathe through my nose without much effort. Honestly, they've been like that since I was very young and I truly thought it was normal. I guess I adjusted to it. Anyway, he started me on a non steroidal nasal spray for 6 weeks. After 6 weeks, I was scheduled to go back for a CT scan of my sinuses to see if the spray helped the inflammation. Well, the CT scan showed no change in the inflammation and also a small cyst inside on of my sinus cavities. OUCH. So I have to have sinus surgery on July 6. The ENT told me that it's only a week recovery, with the first 2 days being the worse b/c my nose will be completely plugged. That's my worse fear, not being able to breathe out of my nose. My second worse fear is being head butted in the nose by my son during recovery!

So, while that news was certainly an inconvenience, I knew it could have been worse. And, yeah, it did get worse. Back in April, I went to my GP for lower back pain that I'd been having for months. I ignored it for so long b/c I thought I'd pulled a muscle, but then I noticed that it wasn't hurting everyday and when it did hurt, it came on all of a sudden and I couldn't find any relief. The Dr sent me for X rays and when those came back with abnormalities, she sent me for an MRI of my entire spine. The results surprised me. My lower back is just fine, with the exception of the scoliosis I've had since birth, but my neck is what's showing signs of spinal stenosis (narrowing of the spine). My understanding (from my GP's explanation) was that the narrowing of my cervical spine was causing a disc to bulge and press on my nerves, causing the pain in my lower back. I did find it odd that there was NO pain at all in my neck. My Dr sent me to a physical medicine Dr to discuss treatment options and pain management. Well that appt was this past Friday, and I was NOT prepared for what I was about to be told. First, she did a full range of motion assessment on me and she was surprised that I had no weakness in any limbs and no pain at all in my neck. Only in my lower back. She had me to stand up and she looked at my back and immediately saw the scoliosis which she said is pretty moderate and the curve in my spine is what's causing my lower back pain b/c my muscles on one side are very tight. She wants to me to go to physical therapy and to take a muscle relaxer every night for 2 weeks, to see if it helps to loosen up my muscles and stop some of the pain I've been in.

Ok, simple enough, and not a shocker b/c I've been knowing about my scoliosis. But then the Dr says "However, that's not why you are here." HUH?! WHAT?? She said "Your MRI results are pretty bad and rare for someone your age." At this point I'm just like, Ok... Then she said, "Based on your MRI results, I need to be referring you to a surgeon and when a surgeon sees the results he will recommend surgery." Speechless. Then she says, "But you are not having ANY symptoms at all. All of the pain you are having is due to your scoliosis. If you hadn't complained of that pain, we wouldn't have found the problems in your neck." Me, sitting there nodding in agreement and astonishment. Then she says, "Well, at your age, I don't want to send you to a surgeon if you aren't experiencing any symptoms b/c it is a very risky surgery on the spine and I've had colleagues who had the surgery and were worse off after having it done. Right now, all of your limbs are strong, your reflexes are fine, your muscle tone is great, so I don't want to risk messing any of that up." I agreed! She continued, "However, you need to be aware that your cervical spine is VERY narrow and fragile. A collision or a bad fall could cause your neck to break and you can become paralyzed." At that point I was just staring at her... She gave me all of the symptoms to be aware of and told me as soon as I started to feel any of these symptoms, I need to give her a call and she will call in the referral to the surgeon.

Wow. I seriously think I'm still in shock and denial about this. A week away from turning 30 and I find out that my spine is very fragile. My mom has already called me to tell me a laundry list of things that she doesn't want me to do. One of the things included no more roller coasters!! :( And she also suggested I drive with a neck brace on. HA! Yeah that will happen. I've decided to just give it to God b/c those pictures may show that my neck is narrow and fragile, but I have no symptoms proving that point. I bet my neck is stronger than the Drs think it is. For now, I've added some Calcium and Vitamin D supplements to my diet and life will go on. I wonder what types of household chores I can get out of b/c of this....

Tuesday, June 1, 2010

Poor response to vaccines

On Friday afternoon, we had our followup with the immunologist to discuss the results to Jayden's bloodwork. In Layman's terms, Jayden's immune system is compromised. Several values remained low and in one area, an entire group of bacteria that he should have built up a tolerance against from his vaccinations showed that he is EXTREMELY susceptible to them. The Dr explained that these results showed that Jayden did not respond well to the vaccine. We discussed more about what could happen if his immune system was left this way (recurrent pneumonia, RSV, strep, meningitis etc) and our alternatives. We decided to let him get the pneumovax vaccine. He will go to the lab in 4 weeks to have the blood tests done again to re evaluate his immune system. If the numbers are higher, then great! He'll just have to have his immune system checked once every 5 yrs and have the vaccine repeated if need be. However, if his numbers remain low, then we can confirm that his immune system is not responding properly and he will need immunotherapy. The good news is that his levels ARE PRESENT so no matter the result, we will have a solution and it's definitely not life threatening, thank you Lord. We are certainly hoping for a positive response to the pneumovax, but if not, I am glad to know that there are options for him!