June 2015

It has been so long!! I used to be so good about keeping up and then life got busy. Xander is such a busy little guy. He never stops talking and, for the most part, we love it. Some of his sayings lately,

****** "Xander come on, please keep walking."

Grunting, "I can't, mommy."

"Why?" more exasperated than anything.

"I don't have wegs."

Looking at his legs, "Why?"

"I a mewmaid." (mermaid) ******

****** >Coming out of the library, "Mommy, I dwive your car."

"Ummmm, no, I don't think so. When you're bigger."

A few seconds later, "I'm biggew now, mommy."

"Not big enough." ******

****** "Mommy, I want wound cackews."

"What are wound cackews?"

"Wound, wound... cackews"

"You mean Round Crackers? I don't know what a round cracker is, son. Show me." ******

****** >"Bones, come down staiws."

"Xander, I think Bones needs some silent time."

"Ok, I need siwent time too."

Sits for 6 whole seconds. "Ok, Bones, come now and pway with me." ******

****** "Time to say prayers, son."

"I can't cwose my eyes." Grunting loudly. ******

****** "Xander we have to get ready for school."

Laying on the ground. "I can't, mommy, can't get up." Grunting.

I look at him struggling to stand, "What's wrong, little man."

"My seatbewt is too tight." ******

****** "It's time for school."

"I not going to schoow."

"Yes, you are. Come on."

"I not going. It's Sunday, mommy." ******

****** "Tell daddy what you did today."

"I get up and go on walk and pway at paygwound and go to school and eat snack and pay outside and go to school and come home on bus and eat a snack and go to schoow-" breath.

"Xander, tell daddy what you did to the picture."

"I don't know..." ******

****** Morning (5:00 am)- we're in bed asleep. Xander comes in to wake us. "Mommy, where's daddy."

"Right here."

"No, daddy at work."

"No, he's right here."

"He's at work, mommy."

"Xander, I am right here."

"No, daddy, you at work." ******

****** "Mommy, I need pood."

"Do you want mac-n-cheese?"

"No, mommy, pood."

"Mac-n-cheese is food."

"No, mommy, I want pwuit snack."

"Fruit snack is not food. It's a treat."

"I want tweet pood." ******

****** "I want a toy." Xander's voice floats from the back of the car.

"Xander, you are not to ask for a toy. We are not shopping for toys."

"I don't have enough toys, mommy."

"Oh, you have plenty of toys. Please don't ask again."

Minutes tick by... "Mommy, can I have one of those things I plway wif?" ******

****** He and his uncle Ben:

"I want a bottle."

"Bottles are for babies."

"I not a baby I a big boy."

Then you can't have a bottle because bottles are only for babies."

Xander thinking, "But, I mommy's baby." Looks at Gigi, "I weady for bed now." ******

****** Our biggest argument is bedtime. I know, you are thinking that is the big argument for most parents and their children. ours goes something like this.

"Mommy, I weady for night night."

"It's too early for bed."

"No, mommy, it dark outside. Time for bed. I tiwed."

"Xander it's only 5:00 and the sun is still shining bright."

"No, mommy, it dawk. Pwease...?"

"Not yet. You have to wait until at least 6:30." ******

Welcome to the life of Xander and some of his fun little sayings. I do so love this little guy. We are wrapped around his little fingers.

November 6, 2014

I'm back!! I have a lot to catch up on. Let me begin by saying that Xander has grown so very much. He starts school on Monday and I'm not sure I am ready for the change- he is though, and that is what pushes me to let go. We went over to his cousins house tonight. I work for Anthony (brother-in-law) when he needs help with his balloon biz. It's fun and I do so enjoy the adult conversation. Xander's cousins got bunkbeds so all the way home I had an intense conversation with my son. "Dames and Isaac got bunkdeds?" Was how he started the conversation. "Yes, they did" "Dames and Isaac get on bunkded." "Yes, they get to sleep on it." "Dames and Isaac seep on it?" He was going somewhere with his inquiry I just wasn't sure where. "Yes, they do." "Aunt Mimi got on it?" "No Aunt Mimi has her own bed. She sleeps with Uncle Anthony." "Aunt Mimi no bunkded?" "No, Mimi and Ant sleep in the same bed like mommy and daddy." "Mommy-daddy bed. Ander bed" "Xander has his own bed. Xander's bed is a twin bed. It has drawers and lots of stuffed animals on it." Silence for a minute. "Dames and Isaac got on bunkded. Aunt Mimi- no. Mommy-daddy bed. Ander no bunkded? Dames and Isaac no toys." Ah, we're getting to the reason for the conversation... "No, sweetheart, Xan doesn't have a bunkbed. But Xander does have lots of toys on his bed and James and Isaac don't. Mimi and mommy and daddy don't have bunkbeds either." "Ander no bunkded. Paw patrol bunkded?" "No, paw patrol has there own beds. Xander has a twin bed. Anthony and Mimi share a bed. Mommy and daddy share a bed. James and Isaac have a bunk bed." "Paw patrol has own beds." "Yes. Paw patrol has there own bed." Silence for sometime. I actually thought that he fell asleep. "Dames and Issac got bunkded. Ander no bunkded. Paw Patrol bed... Ander ded. Papa ded. Gamma ded." "You don't need a bunkbed until you have a brother..." I'm glad I know what ded is supposed to be or I might worry a little. We may have to eventually invest in another bunkbed... Life has been so fun with our little man. He is growing so fast and has so very much to say. He loved trick-or-treating this year. He didn't know what to think about all these strangers just handing him candy. He got to show off his Pooh Bear costume again this year. I'm sure it will be the last year... He sure did like to wear it. He loved seeing all his friends dressed up in fun costumes, too. We went trick-or-treating several times and he seemed to really like it. He did try to take a little girls candy, but, in his defense, she had just turned from getting a piece of candy from the lady and Xander thought she was giving it to him...

The other day I was finishing up some chores and heard a crash somewhere near the bathroom. i decided that I would finish my task and then go check on Xander. That lasted all of a second as so many possibilities ran through my head. As I walked toward the noise Xander peaked around the corner of the bathroom. As I got closer I noticed something attached to his chest and tummy. He looked at me and stepped out, stating, "Ook, mommy, tickers!" Sure enough he had found some white stickers and placed them on his little body. I couldn't help but laugh. He was so very proud of his accomplishment.

To say that he fills our life with joy is to say the ocean has a few drops of water... How we adore that little man!

August 4, 2013

Finally, I am able to get onto here and write. Xander, oh my sweet loveable little man, where have you gone? Xander threw his first big temper tantrum. He was screaming for something and dropped down to his knees, looking to us for a reaction and then threw his little body to the ground and flopped around like a fish. Scott and I didn't know what to do and, as we looked at one another, we burst into laughter. Wow, this is gonna be fun. He's so dramatic. He's such a little love, at the same time. He gives daddy hugs and pats his back. He climbs up and hugs me tight and gives his slobbery open mouth kisses... (Now the blogs not letting me upload pictures, so...) Xander understands us clearly. The other day he was running around in his diaper and I said, "Xan, let's get ready to go bye-bye." His little legs moved quickly towards the door as he glanced over his shoulder to wave to his daddy. I had to bring him back in the house to get dressed and boy, he was not happy about that. Sunday we got ready for church and I told him to bring his shoes so that we could go and he brought his favorite little summer shoes. He loves to help mommy and daddy. He is opening and shutting (slamming) all the doors in the house. He loves to flip the light switches on and off and run over to make sure the light bulb actually lit up. In nursery last week they introduced play-do and Xander ate some. This week the teacher told him not to put it in his mouth. Xander took that play-do and examined it closely and then touched it to his cheeks, forehead,nose, and chin before looking at the teacher. They love him. He enjoys his time in nursery and loves his teachers. They always let Scott and I know what a joy he is to have in class. The other day he saw one of those play bottles under the cabinets so he got down and reached and reached 'til he finally got it and he put it in his mouth. He was getting so frustrated at that bottle as it didn't yield the milk that was obviously in it. When the teacher saw it she ran over to take it to him. When we picked him up she apologized profusely for allowing him to put it in his mouth. Scott and I just laughed. We just don't worry about germs as much. I always thought I'd worry about my children putting everything in there mouths. I thought I'd always carry bottles of sanitizer around with me. No, I guess not. Xander loves the bath tub. He will stand up at the very end and slides down the tub on his tummy. He loves to turn the water off and on and give his cars a good carwash. I was watching him conduct his first car wash the other day and he looked at me and pulled the car out really fast, as though he thought I would get mad. It's strange because we don't get mad at him. We are firm with him when there is a chance that he will hurt himself, but... He doesn't like to sit still too long. He has a little table and chairs that are his size and that is where he eats. He will take a bite and wander off to play for a minute and then come back to take another bite. We are thinking of adding a belt to that chair and belting him in during meals... Oh, my son. The speech therapist told us what we needed to do to get him to talk (first visit). The second visit she hung out and played with him longer, watching him run back and forth with new toys. When she got ready to leave she looked at us and admitted, "Now I understand what you mean. He just does what he wants and talking doesn't seem to be one of those things. I will have to adjust my approach." Xan has an appointment on Friday with the orthopedic doctor. We wait to see what is next for our little man. He is such a joy to us. He's so beautiful. We catch ourselves just staring at him as he makes faces and dances, hugs the dog, plays with his trucks or brings all the books to us to read. He is such a happy little boy (except for those moments). He still loves his nap time and bed time, giggling as we carry him to bed and doing a little wiggle dance on his back when we lay him down and he cuddles with his Pooh. He loves to get dirty and, I find, those are some of the best times to get a hug from my little man. His giggle is awesome!! When he does speak, his little voice makes us smile. His smile is the most gorgeous one I've ever seen. He loves daddy's transformers- even though he still brings them to mommy to play with. He's into everything. Pulling out drawers and all the contents. I enter a room and the floor is littered with my craft stuff and Scott's toys and computer stuff. He loves to help us. We helped some friends pack their stuff into the moving truck and Xander followed us back and forth, up and down. He loves to help us clean up (most of the time). He likes to push the buttons so anytime I am doing laundry or loading the dishwasher he is right there to help me and, once the doors are closed, he gets to turn the machines on. We still haven't introduced many sweets into his diet, but when daddy has something tasty, Xan wants some too. He loves to share mommy's cereal. We still can't get him to eat ice cream. So sad. I will post pictures as soon as I am able...

6-26-2013

We took Xander to the geneticist today. She was quick to tell us that Xander does not have EDS. What?! But, for the last two months... Moving forward. We received a lesson on chromosomes. Everyone has 46 chromosomes - 23 with 2 legs each. They are numbered and each one has a specific purpose... That's all I have for the lesson. Chromosome 1 and 9 (for Xander) are the problems. If he had EDS Chromosome 1 and 9 would only have 1 leg each. Xander's chromosome 1 and 9 have 3 legs. The geneticist isn't sure what that means. Chromosome 9 is the one that effects the connective tissue... (I believe I got this right- there are legs and numbers and so many things). Anyway so he has 3 copies instead of 2. Scott asked what all this meant and the Dr commented that she had no idea. She did refer us to an Orthopedic doctor for Xander who walks with a funny little jerk. He favors his right hip and lifts his little knees as though he were a soldier marching to the beat. His skin is a little softer than normal and his skin has more elasticity which are signs of EDS, but... Basically no answers taking us forward but one syndrome taken off the table. On the way home we picked up some supplies and set Xander up with a little sandbox on the back patio.

Xander LOVES it...

Daddy's Day was wonderful. Xander got his daddy a superman watch and we spent time as a family...

Xander dressed like daddy- they were such a wonderful couple of men. Xander found the trail mix and fell in love with it. He dumped it on the floor and ate his favorite pieces...

Xander has been walking more than not. He has more words in his vocabulary. He still loves to tell everyone "no". He loves to talk on the phone. We can be in a store and, if a phone rings, Xander perks up and looks around saying, "Hi. Hi.." He loves to put all kinds of toys and objects up to his ears and saying "Hi" even putting the item to our ears so that we can talk into that item. Xander is very articulate. He will take his daddy's hand and place it on his waist when he wants to sit by Scott. He places items in our hands to let us know what he wants. He absolutely loves to play with his great-grandma. They will play hide-and-seek. She taught him how to knock on the door. He loves to sit really close to her in church and hold her hand. He brightens up every time she comes out of her room and he hears her walker. He loves to see how things work. He will turn on the vacuum and then get down on all fours to look under it and see how it works. He examines everything he can, trying to figure it out. He loves buttons and switches and always wants to turn the lights off or on. The other day I watched him turn the switch on and then walk over to the light and look up into the shade then back over to the switch, turn it off and wander back over to the light to see that it was out. He did this several times before moving onto something else. He's pulled his crib apart a little at a time as he figures out the screws and ways to get them out- we still aren't sure how he does that. He love to help mommy load the dishwasher. He helps put the silverware in the basket and has enjoyed putting a plate in here and there. He is always cleaning. He'll get in the bathtub and pull all the shampoo and conditioner bottles down and run the washcloth over all the surfaces, cleaning. Today, after the appointment, we went to the Olive Garden to eat. Xander cleaned the table and his plate with a napkin as soon as he was done eating his food. His character is growing and he is becoming strong and wonderful and bright.

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...