5.26.2013

Oh, how time flies. We are still waiting to hear from the doctors. It seems to take so long to hear from them but... soon. Xander is walking all over, but every time I try to take a picture of him walking he hams it up and ends up rolling around on the ground. All things in time. He loves to play~ he's quite the ham and laughs to laugh it up with mommy and daddy (and Bones). I can't remember life before our little guy. He has the best laugh and loves to be tickled. He loves to play peek-a-boo and clap and sing with daddy. Bones has helped Xan so much. They play together, fight, laugh and play tug-of-war over toys and food... Nope, he's not sleeping... just listening to the motor. He will sit and play on his computer for hours, laying his little head on the keyboard and listening... We promised we wouldn't spoil him with toys~ oh well... He loves to crawl up the stairs and slide back down them... He still loves lights... He is saying "nonononono", "yaya", and "up". He loves to brush his teeth and play in the water. He is walking everywhere. His little steps are jerky and stiff but he's getting the hang of it unless his hip is hurting then he crawls. He went to his first dentist appointment and he has 16 teeth and we are to expect 4 more- they are a little tight but they are shaped well and are clean and he didn't bleed too much (people with EDS tend to bleed easily and have mis-shaped teeth as well as an abundance of teeth). He will have fits where his body just goes ridged which could be a sign of pain- attacks or him just throwing a tantrum. He could have quite a bit of pain in his life but we will do all we can to make it easier for him. He loves to play peek-a-boo even if he's just hiding on the other side of the glass door... He's finally growing out of his 12 month cloths and may be fitting into 18 month soon. He HATES his diaper changed and fights it every step of the way- you'd think we were beating him. He loves to talk on the phone and just keeps saying "hihihi... hi" I even caught him talking on the tv remote the other day... He makes us laugh. He's had many hair cuts in his young life and he got a hold of mommy's vibrating, hand-held pedicure/foot sander and pretended to cut his hair while Scott and I took him on our morning walk. He loves to read the scriptures and is finally letting us read some of his other books to him. He'll pull them down and bring the ones he wants us to read to us and then sit and point to all the pictures and help turn pages. He's eating so much better and is gaining weight and even has a little tummy. He loves nap/bed time. If we are late he will come and scream at us until we figure out that it's time for him to go to bed. As soon as he sees his bed he giggles and gets excited and then cuddles up and snuggles with his Eeyore or Pooh. He still screams way more than we'd like but we hope to see him using more words soon...

4-24-2013 The Diagnosis

Dr. Ballard took test about a month ago. One of them was a chromosome test (genetic testing). Today Xander had a follow up appointment and we were given a name for what he has. Xander has Ehlers-Danlos Syndrome. We are already on the type of diet he needs to be on (low sugar small amounts of red meat). I was excited and saddened to get the results. Excited because we now have a name and whys and sad because I wanted him to be 100%. As Dr. Ballard gave me the information my mind was blank. After the meeting I got us to the car and fell into the drivers seat and cried as I punched in Scott's number. I cried to him as I tried to explain what I couldn't remember. We hung up and I drove out of the parking lot to run our errands for the day. Every once in awhile a tear would escape and run down my face. As I drove I kept looking in the rear view mirror. There was my happy little boy watching the world rush by. He was the same little boy he was before the appointment. The only difference was that we had a name for what he had... I felt an immense flood of love, relief and gratitude for my little guy. We would get through this the same way we got through everything, a lot of prayer, hope, work and a Father who would do anything for us if only we obeyed. Xander and I shopped for what we needed and on the way to lunch I looked back to see him asleep. So, I got home and researched a little... I searched the internet and found this explanation: "Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications. In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names: the arthrochalasia type, the classic type, the dermatosparaxis type, the hypermobility type, the kyphoscoliosis type, and the vascular type. Other forms of the condition may exist, but they have been reported only in single families or are not well characterized. Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type. An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome, particularly the hypermobility type. Infants with hypermobile joints often appear to have weak muscle tone, which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in infants with the arthrochalasia type of Ehlers-Danlos syndrome. Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars. The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles. Extra (redundant) folds of skin may be present as affected children get older. Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably, causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb) during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe, progressive curvature of the spine that can interfere with breathing." (http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome) (http://www.ehlersdanlossyndrome.org/) (http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706) I believe he has a very slight case but only time will tell. Most people aren't diagnosed until they are adults so we have an upper-hand... We will be doing some traveling to Phoenix as that is where the geneticist are that we will need to see, but... I called my mom, cried some more, fell asleep and woke knowing that there will be days that I will cry, days I will hold my son tight in my arms, days I will want to crawl in bed and forget, but I will not be angry. I will not allow myself to be bogged down by frustration and hurt. I allowed myself the minutes for self-pity, sadness, tears, now it is time to be strong for my little man. He is the one I live for. One day he will need to cry on my shoulder. He will need me to hold him tight. He will need me to be strong. He will need to know that I love my Father and that I know that trials are given to make us stronger. We will be stronger and closer and better because of this. I will teach him by example and love that this is just a bump in the road and that together we can conquer all things. He also gained weight- he's up to 23 pounds and he grew to 32 inches. He does eat more than this pictures would suggest... He's so proud of himself. He learned how to turn the water on, plug the sink, and loves to brush his teeth now that he can control the water and has a toothbrush that vibrates. Ran errands. Xander wouldn't put down his Winnie the Pooh (it's the bear Scott gave him)... Scott's been out of town and Xander and his WP have been inseparable...

21st Month

Wow! What happened to March? Well, it wasn't a great month for this family but some good things happened. Scott's grandpa passed on the 4th of March. All the family came down to be together and celebrate his life. It was fun to see everyone and to listen to his recorded life. Xander loved playing with his cousins, especially Chloe, who stayed for a couple weeks. He had some rough tantrums while people were here. He has a terrible anxiety about change. When the last group of people left and he had his home back to normal he was our happy little man again. Then we heard of the loss of Madison Wallace, one of Melissa's young women. She was 16 and she jumped into the Sioux Falls River to save her little brother, Garrett, when he fell in. She lost her life. She was a beautiful girl who was always so happy and full of love for everyone she met. Melissa had a rough time especially as she was unable to go to the funeral. Xander got sick at the first of the month and passed it on to his mom. Melissa was sick for 5 more weeks- 4 of those were severe. It hit really hard. Luckily Xander didn't get it so bad. Xander went to see his new doctor and screamed most of the visit. She noted that Xander is dragging that right leg. Jemile (my sister-in-law) gave us some pointers to help Xander. She worked really close with him for an hour or so and had him standing and walking, while holding her hand. We have been doing those exercises and walking with him all over the house (his new favorite thing). Then, Friday the 5th of April, Xander walked 7 steps all by himself!! So excited! Sweet little boy has his first therapy appointment on Thursday... Xander is getting his sense of humor and loves to have fun... (a little blurry but you get the picture) He loves our morning walks. He sits up and looks around and yells at all the dogs that bark at him... Scott loves to play with Xander. Xander likes to throw himself back when daddy holds him. Scott calls it the bungee drop... He loves to be outside and play in the rocks (no grass here). He'll stay out there and yell at Bones... My baby in his belly shirt with a car... and his first skinned knee- the first of many... He's finally allowing mommy to ready to him. He'll sit in my lap and turn the pages. He loves to rub his food all over his face. He's jabbering more and more. He loves to talk to Bones and they play all the time. He loves to walk around the house as long as mommy or daddy hold his hand. He loves bed time but is less excited about nap time. He still likes to eat bones dog food. He "helps" mommy put clothes in the drawers and then pulls them out. He loves to look through his books all by himself. He loves cars and makes the noises for them as he drives them all over the place. He loves to get into great-grandma's cabinets- she has the best "toys" (measuring cups) that he can "drive" all over the floor. He loves to help load the dishwasher and take the spoons out. He hates his diaper changed and crawls away as fast as he can if he sees the diaper. He screams through the whole diaper changing process. He says "bu bu" for bottle and "dod dod" for dog. He loves to yell for Bones when they are outside and enjoys playing in the rocks (I think he would love a sandbox). He loves to scream...

Month 19

A lot has happened the last month. I went to see my parents- why no pictures? Good question!! Well, actually there are some cute pictures on my phone but they won't be emailed! Soooo, until I can figure the cell pictures out... Figured it out!! Xander loved grandpa and grandma's big tub... This little Scorpion was on the wall next to the stairs. It was the size of my pinky nail... I've been thinking a lot about why we are here in AZ and I feel that I need to explain from the beginning and in full detail. My guess is that I haven't written it down and that Xander will need to read it some day. So here goes... On August 4 Scott received a call stating that his grandpa was not doing well and that he had weeks to live. Scott was devastated, but what could we do? On Sunday August 5 we went to church early as Scott was the branch clerk and needed to be to church to complete his tasks. Xander and I went into the chapel to wait and to get settled. Scott came in about 10 minutes before Sacrament started and sat down heavily. I looked over and saw the tears building in his eyes, "I can't control my emotions," he stated and I placed my arm around him. "Go call your mom," were the first words out of my mouth. I pushed him to go and finally he did. As he got up to go I thought about what he was going through. My poor husband was morning not just his grandpa but the only strong male presence in his life. The thought that came into my mind was, "He needs to go to his grandpa and he needs to go now." When Scott came back I could see the tracks of the tears on his cheeks. I knew that he would go. "I need to talk to you..." he stated. "Me too. After Sacrament." We partook and then Xander I left as he was ready for a nap and started his crying. Scott soon followed and we ducked into a room to talk. I told him of the thoughts that come to me as soon as he left. He was surprised and stated that he felt that he should go home and call his mom. I explained that he just needed to leave. He called his mom and a debate began. She wanted to call her mom. Scott wanted to see what would happen. I just wanted us to act. Scott decided he needed to go home and I decided Xander and I would stay at church. When I got home Scott had a train ticket that would leave on Wednesday. He had to talk to work first. Monday work told him he could have up to 45 days leave of absence. We both thought that would be more than enough... I dropped Scott off at the bus station at 1:00pm so that he could take the bus to Kansas where he would catch the train. The first month was the toughest and we videoed over the phone and skyped as much as possible. In that time Xander quit pulling himself up and stopped the little noises he was making. His progress stopped ad he digressed. He would get so excited when he heard his daddy's ring tone. Then he would grab the phone and army crawl off so that I couldn't get the phone back. Scott and I always discussed if this was benefiting our family. It was such a struggle, but we knew that this was what we needed to do. I had the home daycare and had Xander started on headstart and physical therapy. There was so much to take into account. Xander and I flew out in September (9) to see Scott. It was a quick visit and then we were back home. In October Scott came out to see us and we discussed again what was the best thing for our little family. We decided that I would pack and travel out to AZ so that we could be a family again. We decided that I would move out in December as the house was paid through and I had to give my moms enough time to find someone else to watch their little ones. I packed the house and gave away/sold as much of our stuff as possible and what couldn't fit in the truck and towed car got stored. Xander and crossed the country with a dog in the back seat. Three days later we pulled into the house. We've been here ever since. I have been able to travel to Tucson and see my parents and then to Salt Lake to see my sisters and brother. Xander got to play with his cousins... It's been quite an adventure. Xander is progressing again he'll be walking in no time. He jabbers and shakes his head no while saying nonono... to be pulled up by his dad he will grab daddy's arm and put it around his waist and then lift his little hands up towards daddy. He loves toes- uggggg!! If you aren't careful he'll suck your toe. Scott and myself have both been shocked out of projects as Xander put his little mouth over the big toe and bite. Little monster!! He does the same thing to his daddy's nose. He's so crazy!! We think he might be kissing his daddy. He doesn't kiss mommy that way, though. I can't deal with it but Scott just laughs which makes Xander laugh Then the dog always gets involved!! He's into everything!! We never know what he's going to get into- He played under a crate for a good 1/2 hour... At night he wanders until it's time to go to bed- he's so busy. He loves his cars and makes growly noises as he drives them around. He loves it when I drive those little cars over his tummy and head, laughing like crazy... And can someone please tell me why babies sleep like this when they have the whole bed??! He loved playing with Cali- they had soooo much fun together... Bath time was interesting. Cali pulled herself up and so Xander thought he should be able to as well. But they have soft water so he slipped in the tub and when I went to grab him and he slipped out of my hand and fell back into the water. He hasn't stood up in the tub since then and I got soaking wet as he clung to me and I clung to him. Scary moment- let's never repeat that one... Cali wasn't sure she wanted to share her highchair with her cousin... Cali had the funnest toys... He showed Cali how you are supposed to love your Winnie the Pooh... We went to the D.I. to get toys and look at books... He loved playing with the Lee's (again, why no pictures? I fail)... The last day we were there Coley and I and the babies went to IKEA since I've never been to one... Then we came home... And my little man got sick~ The only good thing about that... He loves to cuddle when he's sickly...