Lauren's World

8 Days in Hell

2008-12-02T14:21:00.014-05:00

Well, my poor little baby's luck finally ran out. All this time, we felt so fortunate that Lauren has had so few medical and other problems since her diagnosis with Williams Syndrome. We finally had a crisis last week that made me that much more grateful that she is usually quite healthy.

It started Friday, the week before Thanksgiving. She began vomiting in the morning, and it lasted all day, without her ever even wanting a sip of water. I knew she was dehydrated by that time, so we headed to the ER at Genesys Hospital in Grand Blanc for some IV fluids, thinking she would be fine and able to come home by morning. Well, she didn't improve, so they admitted her to run more tests, find out if there was an infection, and continue the IV fluids. She had tested positive for Strep throat, but since she was still vomiting up to 30 times per day, they started to think something else was going on. By Sunday, she wasn't perking up, and was still vomiting, and they weren't able to diagnose her other than the strep. Then she had a very scary, very bloody diaper when she passed some stool. The doctor assured me it was just an infection, not to worry, but it would take 24 hours to run cultures to find out what infection was causing it. I asked if she needed an xray or ultrasound to see if something more serious was happening that required surgery, but I was told, "No, it's nothing surgical, just either stress from being sick, or an infection that will take 24 hours to diagnose." That night, her discomfort increased, while the vomiting continued, and I was starting to get really scared that she wasn't being properly diagnosed. She was in so much pain by this time that she was writhing, rolling around, trying to get comfortable, and begging me to help her. It was excruciating for her, and almost as excruciating for me to watch. I was so upset, in the middle of the night, twice I brought Lauren out to the nurses, asking, "Please, isn't there something you can do? Is there something else you can give her for pain?" They practically ignored my cries for help, saying, "Sorry, all we have on order for her is Tylenol." Finally, morning came, and as soon as the doctor got there and realized how much pain she was in, and after another horribly bloody diaper, she was able to diagnose her correctly. She had an intussusception-an area in her small intestine that was sliding into itself, like a telescope. They said it was probably from the strep infection causing enlarged lymph nodes in the bowel. They tried twice to use a barium enema to "blow it out," but it was unsuccessful. They said surgery was necessary, and the xray definitely showed an intussusception. If they had listened to me earlier when I asked about an xray, she would have been diagnosed a lot sooner, and it would have spared her a lot of pain.

So they were going to do the surgery, and as per procedure, we were having a consult with the anesthesiologist just prior. He said, "I will be the one to be honest with you. You don't want your daughter to have this surgery here." Wow, thank God for his honesty. It turns out this hospital had no specialists, no pediatric radiologist (who should have done the barium enema), no pediatric surgeon, and no pediatric ICU in case something went wrong, which was possible considering she has a heart condition. So they sent us back upstairs, to try to figure out what to do with us. Thankfully, they had given Lauren morphine, so she was a little more comfortable, but we were desperate for her to get the surgery over with, so the intussusception didn't become life-threatening. So they called the one hospital nearby that they knew should have a pediatric surgeon, only to find out he retired and has not yet been replaced. Then we had to wait over two hours for the University of Michigan to let us know if they had a bed for her. They never were able to give us an answer, so the doctors didn't know what to do.

During all this time, I had been in touch with Lauren's pediatrician, Dr. Martin Levinson, on the side, because he was not a physician at the hospital where I took Lauren. I just took her to the closest hospital, thinking all she would need was IV fluids. Well, as soon as they wanted to admit her, I should have packed up and left for Beaumont Hospital in Royal Oak. Then Dr. Levinson could have cared for her, and they are a full-service specialty hospital. I had been keeping Dr. Levinson in the loop, because he is WS-knowledgable, and I didn't want her misdiagnosed due to her WS. Let me take a moment to praise Dr. Levinson! He gave me his personal cell phone number, and told me I was welcome to give it to anyone caring for Lauren. And as soon as I told him they didn't know what to do with Lauren, he said "Let me call a pediatric surgeon I know and I'll call you right back." Well, he had it set up so fast at Beaumont, I can't tell you the relief we felt.

They had to transfer us by ambulance, and poor Lauren was so listless, it was heartbreaking. She just lay against me, whimpering, the 45 minutes it took us to get to Beaumont. But once we were there, though we were afraid for her to have surgery, we knew she was in good hands. They were so wonderful and reassuring, and you could tell they knew what they were doing, and not just trying to figure it out like at Genesys. Her surgeon was Dr. Winston Chan, and he was so kind and confident. We were just sobbing, and he said,"Don't worry, I know what I am doing, and she will be fine."

And she was. It took her a couple of days before she started to perk up, which was a long time to wait and still worry. But on Thanksgiving day (how appropriate), she was able to finally smile, and play a little. I was so relieved! Then, after a full week of no eating or drinking, she started to act hungry. We had to start slow, but she didn't want to! She ate a whole single-serving box of Cheerios. We were able to take her home Friday, the day after Thanksgiving. She is a little thinner, a bit sore, and looks a bit like she has been sick, but otherwise she is just great, and is so happy to be home!

We got the pathology report back from the bowel resection, and it turns out the intussusception was caused by something called a Meckel's diverticulum. It's a bit of tissue that's a remnant of when she was an embryo, when the umbilical cord was attached to the small intestine. Usually the tissue goes away as you develop into a fetus, but in two percent of people, it remains, and in two percent of those people, it causes problems, so it's quite rare, though not unheard-of. When the bowel senses there is something there, usually sometime before the child turns two, it tries to pass it through, but since it is tissue that is still attached, it causes intussusception. So technically it is not WS-related, though our kids tend to have kinks and quirks, so I can't help but wonder if having WS made her more likely to be susceptible to this kind of thing. I guess we'll never know.

So, though it was a terrible Thanksgiving, we still have so much to be thankful for. Little Lauren is recovering well, we now know to never take our kids to Genesys hospital, and we are so thankful to have such a wonderful pediatrician like Dr. Levinson. Now we look forward to having a wonderful Christmas...

Walking, Talking, and Amazing Us All

2008-09-28T21:45:00.006-04:00

It was recently pointed out to me by a close family member that they have been checking for an update for some time now! Well, I do apologize, but time just gets away from me. So Lauren has just been doing great. She has made some great progress. She continues to be very healthy, and her heart is in great shape. The cardiologist told us in June that when she returns in December, that he doesn't think she will need an echo, and they only plan to do an EKG and exam. This is great because she has to be sedated for an echo, and of course it's wonderful that her pulmonary stenosis is gradually improving.

We went to see Dr. Mervis and Dr. Morris in Kentucky in August. It's always great to go there and get feedback from someone who sees enough WS to let us know how we're really doing. Well, they were pretty impressed. Dr. Mervis said Lauren's fine motor skills are especially good for WS at her age, and that fact that she points is unheard of. This is an important developmental milestone, and she reached it much earlier than expected, thanks to her occupational therapist. They tell me the earlier a child points, the earlier they can learn to read. Don't ask me to explain it, but they tell me in her therapies that things like her eyes crossing the midline of her body, and crossing her hands over to the opposite sides, and pointing, and other things will really affect her learning and reading. It's pretty interesting and I am sure glad they seem to know what they are doing.

Anyway, Dr. Mervis and Dr. Morris indicated some of Lauren's abilities, and lack of difficulties, are "unheard of." Dr. Morris said, "Didn't she read the book [about WS]?" And her pediatrician once said, "You almost wouldn't know she had WS." I don't know why we have been so blessed, but we are so grateful.

Lauren has been walking since July. She started taking steps in May, but she took her time getting comfortable with it. Her balance is one of the things that is unheard of, and she has a normal toddler gait. Now that she is walking, she has really made improvements with her language ability. The therapists said this would happen. Kids often can't concentrate developmentally on too much at once, and learning to walk takes a lot of effort. Dr. Mervis said her communication skills are above average, in that she gestures and can follow a pointed finger. But her language was only average. Since our visit, she has really made a lot of progress with speech. She imitates quite a bit of what we say, and says lots of words, unprompted. Here's what she can say: Mom, Daddy, Hi, meow, woof, moo, this, on, uh-oh, up, hot, ball, balloon, mine, and more. She repeats the following words when we say them: sock, teeth, cheese, book, nana (banana), snack, spoon, bye-bye, out, and flower. She understands an impressive list of words and phrases: peekaboo, No, in, kiss, hug, baby, not in your mouth, give me, where is, use your spoon, nice, sit down, stand up, more, what does a cat/dog say, close it, do this, nose, walk backwards, and hello. If you say any of these things to her, she clearly understands what you mean. She also uses some sign language, and we continue to teach her more signs.

Our therapists aren't going to let her slack off just because she is doing so great! Here are some things they have her working on for Physical Therapy: jumping up, walking over a line on the floor (to improve downward gaze for height differences), walking upstairs instead of crawling, prepostional movements (up, down, over, under, etc.), and running. Occupational Therapy: twisting off caps and removing lids, putting Cheerios in a small-mouthed bottle, and then dumping them out, using fingers instead of palms to put large wooden puzzle pieces in their slots, stringing large rings on a rope, and using a fork to stab food. Speech and Language Therapy: a new animal sound each week, many new directions (we say and demonstrate actions such as clap your hands, touch your nose, pat your head, etc. -eventually she will know what they mean without being shown), and songs demonstrating in, out, up, down, fast, slow, etc.

Lauren has come so far, but there is always more to learn and hurdles to overcome. I know she will still have many problems and difficulties in her future, but we have finally reached a point where we have been able to just enjoy her and not worry so much. We have accepted her syndrome, and it's still scary and causes us worry, but we know we are very fortunate. No one knows what learning difficulties she will have in school, what social problems she will have and whether or not she will make many friends, what her level of independence will be, and whether or not she will be able to be employed, etc. But, right now, she is so happy, and we are so happy.

God Doesn't Fix Problems, He Changes Perspectives

2008-05-27T12:53:00.012-04:00

So I have been thinking about what I wanted to post next for some time now, I just haven't found the time to post anything. I need to learn to let the dishes and the laundry go! I would much rather blog anyway, even though it doesn't seem like it, since my posts are so infrequent.

Anyhow, we went to Florida over Easter, as we usually do. It brought back so many memories of our trip last year at the same time. We had just recently received Lauren's WS diagnosis, and we were going through so much emotionally. We had known long enough to not still be crying every day, but we were still sort of numb and in shock a little, trying to be positive and still very much adjusting to the information. Throughout all three of my pregnancies, I had prayed so much for my babies. I just wanted each to be healthy, with no problem that can't be fixed. I begged God, told him I would do anything, just please let them be typical healthy kids, but if anything has to be wrong, please let it be something that there is a cure for. Well, there is no cure for WS. I thought the bible says "Ask and you shall receive"? Why are some people's prayers "answered" but not others'? Well, that's a pretty deep discussion, and I was a little mad at God for awhile. But I kept praying, asking for Lauren to have the mildest case of WS ever known. He may have answered that one, at least so far.

We have been so fortunate with Lauren's health and so many other issues. She eats literally everything, poops great, sleeps through the night, no hypercalcemia, etc. She has her developmental delays, and her moderate (but stable) pulmonary stenosis, and that's pretty much it. For now. WS symptoms can vary so much it's crazy. We know she will have difficulties learning, health issues, may never be independent, and so on. But we are immeasurably grateful for how well she is doing so far.

During this year's trip, while walking through a flea market near Daytona, I was reminded of someone I met there the previous year. A woman working there struck up a conversation with me about babies. She was so happy that Lauren has the same name as her newest granddaughter, she handed me a penny cut into the shape of a cross, and told me it would always keep Lauren safe, if I kept it near her. It is still taped to the underside of her crib. I am not superstitious, but the woman had no idea what we were going through, and it was very touching.

So, it seemed like everywhere we went on our trip, I was thinking about the difficulty of the previous year and how we were feeling, and how far Lauren had come. I really try to be a very positive person, and difficult as it is to accept that our beloved daughter will be "different," my husband and I both know things could be so much worse. We have come so far emotionally. It is still very difficult, and I still cry for her and worry about her future. But we have learned to make the absolute best of it.

I am not a terribly religious person, but I do have Christian beliefs, and I enjoy reading so many of the clever signs I see in front of churches, trying to get people's attention. For example, "Sign broken, come inside for message," or "CH CH What's missing? UR." Well, guess what a church sign said driving home from Florida, after all these thoughts running through my head?

God Doesn't Fix Problems, He Changes Perspectives

Wow, how much my perspective has changed in a year. Life is what you make it, so make it happy.

Working Hard and Doing Just Great

2008-03-12T13:28:00.006-04:00

Time goes by so fast. Before I know it, it is a couple months later and I haven't posted anything new to the blog. That doesn't mean there isn't anything new! Lauren is doing really great with her gross motor skills. She stands whenever she feels like it (which is often), opens and closes all the drawers and cupboards she can find, and has figured out how to get down from a step (feet first). She does some cruising along furniture, but usually only if she is properly motivated-usually by placing her Daddy's cell phone just out of reach!
Her fine motor skills are definitely getting better, and we work with her a lot. She doesn't overshoot so much with her hands, and she is much better at using her pincer grasp. She doesn't just dump objects out of a container. She will now take them out one by one, with more precision. She is also dropping objects into a bucket. We have worked on that a lot. I guess the release is an important skill to learn. We need to work on much smaller items, like Cheerios into an empty pill bottle. We still can't get her to stack objects or place them in rows, but she will get it eventually. She now refuses help eating and drinking. She just does not want to be spoon-fed! She makes a mess using a spoon, but she gets some in her mouth. I would love for her to start scooping the food with her spoon, but I still have to do that part for her. Actually, we both much prefer finger foods. It's less mess, and she gets to be independent. But she won't get better with a spoon that way! Also, we have noticed much less mouthing of objects. And we are trying to get her to draw with large crayons, but she has done very little of that.
We have been working on shoulder strength quite a bit, because it is so important in order for her fine motor skills to improve. We have her crawl up and down an incline, reach overhead, and she made up her own exercise yesterday. She stood in front of a toy box and opened and closed the lid about 30 times. That should have worn her out, but she loved it.
Lauren has been more vocal, but still no real babbling with consonant sounds. She does say "mmm" followed by "aahh," as she has done for some time. It is her complaint noise so she does it whenever she wants me. I want so much to think it is the beginning of "Mama." It's hard to say, and it's possible, considering how many times she says it when she wants me, but I have to be realistic. I guess either way, it will eventually turn into "Mama" with meaning. I better learn some patience, or I am bound to be disappointed. I know the speech will take her a long time. But I long for her to say it. Her speech therapist said today she is old enough to work with her more specifically on receptive language, and she probably won't attempt speech until she is understanding 20-25 words. I know she only knows a few: Mama, Dada, baby, kiss, no. I can't think of any others that I know she knows for sure. I also sign to her every time I say "eat," "drink," "more," "in," and "all done." She does shake her head no, and it does seem like she does it appropriately. I am constantly naming objects, and when we read books, I help her point or pat the objects we are naming in the book, and we also say the verbs that are happening in the pictures (swinging, jumping, etc.). I am so optimistic that all of this work will turn out one amazing individual (which is true, of course), but how much can I alter how severely WS will affect her?
I have been reading the posts on the WS listserve, and so many comment on the Omega 3 fats, and the cognitive improvements they cause. I don't know if Lauren is too young (14 months), but it is intriguing. I'll have to learn more. Anything I can do that will make a difference...

Happy Birthday, Lauren! Update January 14, 2008

2008-01-14T20:19:00.000-05:00

She's officially no longer a baby! Lauren turned one January 8. I can't believe how fast the first year goes by. We had a really nice party for her on Saturday and she of course loved all the attention. Obviously from the pictures you can see she enjoyed the cake!

Lauren has continued to make some really nice progress in her therapies. She is starting to cruise around slowly. She asserts her independence, and often doesn't want help with feeding herself, standing, etc. Just today she clapped her hands a few times, unprompted. She also said "Mama" today, but I am not convinced she said it purposely with meaning, as much as I would love to think that she did! She was whining for me at the time, so maybe...

Lauren does seem to be stuck in some 9 month behaviors. She still mouths objects and toys quite a bit, and she bangs objects constantly. Yes, that was a goal we were happy to see her achieve, but it is still a 9 month skill, so I am hoping she will keep trucking along those milestone markers. One of the therapists suggested it was typical for her to be at that phase, since she hasn't been crawling that long. She hasn't had the opportunity to check everything out in her environment to be past some of the 9 month skills. Her fine motor skills are not terribly impressive. They are improving, but with all the advancements she has made with her gross motor skills, they say not to be surprised that the fine motor skills and language skills have taken a backseat. She doesn't have much precision with her hands. She overshoots and pushes with her hands instead of grasping objects, and she doesn't turn her hands over well.

Here are some developmental goals I have for Lauren: waving bye-bye, turning hands over to look at palms, dropping objects in a container, stacking objects or placing them in rows, using a spoon better, cruising, babbling, recognizing family members' names, less rocking and head-banging.

All things considered, we continue to feel fortunate with all of Lauren's strengths, but we have much to work on!

On The Move! December 14, 2007

2007-12-14T08:36:00.000-05:00

She did it! Lauren has started crawling. She started creeping forward a couple feet or so on November 13, then went a little further each day after that. Now she is on the move, making her way from room to room. Now the fun begins for Mommy!
Lauren continues to show a lot of progress with her gross motor and fine motor skills. She is able to pull herself to a standing position, and even purposely steadies herself so she can let go and stand alone briefly.

She is now banging two objects together. We worked on this in therapy for a long time, so it was a joy to see her "get it." She is also learning to adapt her hand to pick up and manipulate objects out of containers.

Lauren is now able to stay more focused. Her attention span is improving, and she seems quiet when she is "working," like she is concentrating. She is showing more problem-solving skills and an interest in figuring out what we are trying to show her.
So, I remain optimistic and am so grateful for her therapists who are dedicated to keeping her on track with her development.
We are looking forward to a wonderful first Christmas with Lauren!
Happy Holidays!

11/12/2007 First Meeting with Dr. Mervis

2007-11-12T13:27:00.000-05:00

This past weekend we drove Lauren down to Kentucky to be evaluated by Dr. Carolyn Mervis at the University of Louisville. She is considered to be one of the leading cognitive experts on Williams Syndrome. I was nervous about what the evaluation would show, but I was very relieved at her findings. Of course Lauren is so young, it is hard to know anything for sure, but the doctor was very impressed with Lauren's gross motor/physical skills. She absolutely could not believe how close she is to crawling. She said she will still probably be delayed in walking, but she will probably walk much sooner than is typical for WS. She also said her non-verbal reasoning ability seems very good. Also the fact that she doesn't have any feeding problems is very rare (and that makes things so much easier for me-one major issue I don't have to worry about). We do need to work on speech, because as well as she does in the other areas, she should be babbling now and she hardly makes any consonant sounds. Of course she will still have the common problems for WS-I expect she will have delays and difficulties learning, maybe behavioral problems, and certainly medical issues. But she is really doing great at this point. It was also such a relief to have her seen by someone who really knows about the syndrome.
I did have a bit of a reality check in talking with Dr. Mervis. She said there are some WS individuals of "average" intelligence, but even those are low average-I was hoping Lauren would be one of the rare lucky ones who are considered average. But, we will continue to hope for the best, but also be realisitic that she will not be like a typical person cognitively. I have read there are some individuals with WS that do marry, have jobs, etc. But, as negative as it sounds, many say "don't get your hopes up." Well, it's hard not to! We will just keep working at helping Lauren reach every potential that we can. We will also continue to have Lauren evaluated at the University, probably once a year. They are so great there!

10/23/07 Lauren's Latest Echo

2007-10-23T22:24:00.000-04:00

Lauren had an echocardiogram yesterday. Great news! Her pulmonary stenosis isn't even a little bit worse. I went from being so worried, I couldn't sleep, to feeling like celebrating! The doctor was very pleased, because the result shows the stenosis is actually slightly better, even though she has grown quite a bit since her last echo, 3 months ago. Normally, the narrowing will worsen in the artery with growth. The doctor doesn't even need to see her back for another 6 months! So that's one less thing to worry about, at least until April.

Some other thoughts...
I think so much every day about what Lauren's life will be like. We don't know how severe her challenges will be, but I know she will also have her strengths. I do have a lot of hope that she will be one of the lucky ones-maybe she will have average intelligence. I have to be realistic, but there is that possibility. I worry so much, but I don't often let myself consider that she may be one of the worse-off people with WS. I just choose to be more optimistic than that. And I do have good reason to hope that she will do fairly well (see post dated 10/11/07). Sometimes I do think about how sad the situation is, but I have gotten so used to the idea that she will be "different," that I have just come to accept it. It's not so bad. Her life will be drastically different than we thought it would be, but we can't forget that there is still so much to enjoy! I just believe in taking what comes and still choosing to be happy. It is a choice, and we have to choose happiness, for Lauren, for our other two children, and for ourselves. Life is too short to spend it being miserable. And we have a responsibility to all three of our kids to make life as great for them as we can. We take that very seriously. So...don't feel too badly for us. We don't cry ourselves to sleep (anymore).

Update 10/11/2007

2007-10-11T22:32:00.000-04:00

Lauren had a very good visit with the pediatrician today. It was her 9 month well visit. The doctor was very optimistic when I asked about Lauren's development so far. She is very attentive and responsive, and is imitating sounds and movements, which is essential for learning. I discussed with him my need to be as proactive as possible, and ways to help her reach her fullest potential. I have been reading and researching as much as I can to see what I can do to help her. I know she will still have her issues, but I don't want to feel helpless with this diagnosis. I know there are many things I can do that will make a difference later to her quality of life. Recently, I have been trying to find ways to increase the pathways in her brain, which should result in a higher IQ. The doctor agreed, the more stimulation she receives, the better to create these pathways in the brain to facilitate learning and development. I am always looking for more ideas for raising IQ. Studies show, for example, that breastfeeding raises IQ by 3 points. (I have breastfed all my kids until the age of 18 months.) Other ideas I have read can raise IQ: baby sign language (this can be very helpful for Lauren, since speech is delayed in individuals with WS), stimulating memory (ex.: changing one component each week of an object she sees regularly, such as her mobile hanging over her crib), infant massage (I took a course when Katelyn was a baby), spreading out immunizations, protecting from neurotoxins in food and toys, proper iron intake (essential for critical areas of the brain to develop), playing classical music (classical music plays in Lauren's room every night, all night), music therapy or lessons, no television before the age of two, proper nutrition, and water intake (Lauren's physical therapist even indicated, when she saw me giving Lauren sips of water, that water facilitates brain function). I am skeptical as to whether or not some of these things can make a difference, but it doesn't hurt to try and we have everything to gain! After all, she statistically has a 25% chance of being of average intelligence. The doctor feels that based on where she seems developmentally so far, and because she receives therapy and we are starting with her so early, that her chances are even better than that. So I am extremely optimistic, even though I know she will have challenges that we will have to overcome. Who knows, maybe she will beat all the odds and be able to be very independent!
If you know of something else or have a suggestion, be sure to post me a message!!

Update 10/7/2007

2007-10-07T12:32:00.000-04:00

Lauren has really been doing great. She is so happy! She is a great eater-she doesn't want much baby food anymore, she much prefers more texture, so I give her bits of meat, noodles, dry toast, and even donut holes that she makes a huge mess with!

Lauren is scheduled for another echo of her heart on Oct. 22. I am worried her pulmonic stenosis will be significantly worse, but hopefully she won't need surgery yet.

Lauren's therapy is going well, I think. She receives PT and OT twice per week. Her fine motor skills are not great. I think it is a combination of poor coordination with her hands, her pincer grasp, and a visuo-spatial problem. But she shows improvement, and I work with her a lot at home. She is so close to crawling! She gets in position and just rocks back and forth. She doesn't seem to know to raise one hand to get to the next step, and I think she also doesn't have the strength yet to balance on one side to move forward. But she will get there!