There is much to discuss: The Good, The Bad and The Blessings

There is much to discuss:  The Good, The Bad and The Blessings

This is a very long post, but there is a lot to update, a lot to discuss, a lot to process about our recent appointments and findings.  We had several appointments for Elizabeth spanning three days:  Friday 1/9, Tuesday 1/13 and Wednesday 1/14.  Each day has brought us a variety of both questions and answers.  A mix of information that is both good and bad, promising and frightening, and all of this has delayed my updating the blog.  We just needed time to process, wrap our heads around, and just take a few deep breaths about everything that these appointment days have brought our way.  

Friday 1/9  Appointments:



On Friday, January 9th we had three appointments at Children's:  Hematology, Rheumatology and a post-surgery follow up with Cleft/ Craniofacial and ENT. The day started out with a lot of positive news. 

Hematology

At our visit in Hematology, Dr. Cooper ran a lab test on a sample of Elizabeth's blood to reevaluate her anemia.  We were delighted when he told us that her blood counts had completely normalized and she no longer had anemia!  Her blood counts looked great, and Dr. Cooper believes that she likely has a type of anemia that flares up when she is having an period of illness.  We know that Elizabeth has some immune system issues, particularly because of some recent lab results, and Dr. Cooper explained that when your immune system is not working effectively that anemia can often occur, or become worse, during period of illness. He believes this to be the case of Elizabeth.  So, we really do not need to follow up with him at this time, unless there are new developments or the anemia reoccurs and does not resolve itself.

Cleft/ ENT Post-Surgery Follow-up

Then, we had an appointment with the Cleft Team and ENT as a post-surgery follow up for Elizabeth's surgery and other procedures in December.  We have noticed some improvements in Elizabeth since her surgery, which is great.  However, we also have noticed some lingering things, like coughing and choking while drinking. Overall, these scary coughing and choking episodes have been reduced since her surgery, but they do still happen and are just as scary. We discussed the observations of her eating and drinking behaviors post surgery.  The teams checked her out, and they also agreed that her breathing and speech sounds also sounded more clear than before the surgery.  Then, we started into another discussion, which I knew eventually would come, but I still was not prepared for it.  

Our past few appointments with this team, and over the past 3-4 months in general, Elizabeth has had some issues with weight loss and a decrease in appetite. I have attributed these issues to her nearly chronic respiratory and upper respiratory infections, other illnesses and her recent surgeries.  There are many days when we struggle to get her to eat anything, even when she should be hungry she refuses to eat, and she seems uninterested in eating pretty much anything that you put in front of her.  We also have days when she eats great.  We definitely struggle more with eating when she is sick.  You may be thinking, "Well, that's normal.... or that sounds like my toddler."  Even Celtan has days like that.  Even I have days like that.  However, Celtan, nor I, have issues with being underweight.  This is why these weight loss and decreased appetite episodes are so alarming and of such concern to her doctors.  Elizabeth is considered to be underweight, and failure to thrive, because she is below the 5th percentile in weight.  We added a nutritionist to her Early Intervention team in December to help us better monitor her weight and appetite.  Even when she loses a few ounces it is a big deal, because her weight is at such a critical level.  Another drop in weight, again nothing drastic just some ounces, was noted at her weigh-in at this appointment.  

Her Speech, OT, and Nutritionist, as well as the Cleft/ ENT team and her pediatrician have all been concerned with the decreased appetite and weight issues lately.  The other thing that they have been concerned about is the continued coughing and choking while drinking.  Two questions are always hovering around regarding Elizabeth's feeding and swallowing issues:  How much of this is able to be corrected through procedures and surgery, and how much of the swallowing/ feeding issues are related to the hypotonia (low muscle tone) and will never be able to be corrected?  While we are hopeful due to the benefits that we have seen from her surgery in December, and there are still some other things that we can try, we have always known that the possibility remains that all of this may have been in vain, that no amount of surgery or procedures will ever correct her swallowing since she has the hypotonia. It is a fine line, but its a blurred line, and we have to exhaust our options to try to correct the swallowing before we chalk it up to a hopeless cause due to the hypotonia.  The other underlying issue is that if the choking, coughing and aspiration while eating persist, and we have exhausted all of our options to correct these issues, then there comes a point when we have to draw the line and determine that it is simply not safe for her to feed by mouth.  

It was a combination of concern over the weight loss and the swallowing safety issue that led us to the discussion for which I was not truly prepared for that took place in that appointment.  The Cleft/ ENT team discussed the fact that a feeding tube, specifically a G-Tube, is a very likely option in Elizabeth's future.  They discussed a list of benefits that it would provide to her on both a nutritional and safety level.  I appreciate the relationship that I have with them, because they do value our input.  While they were able to convince me of the various benefits, as a parent I feel that discussing the fact that your child needs a feeding tube is NEVER something that you are prepared for.  As much as I knew that this discussion would need to be had sooner or later, and despite the fact that I had discussed this issue with some of her EI team members earlier in the week, I was still not ready for it.  I explained that I feel that the past few months have been full of sickness and then the surgery, and that in my opinion these have all contributed to the issues that are prompting the urgent discussion of the feeding tube.  The team agreed that this was a plausible theory, and the conclusion of the discussion was that they would give me some time.  Instead of repeating a swallow study at this time, as was the original plan, they are going to have a swallow study repeated at her next follow-up with them in March.  This will hopefully give her time to heal a bit longer and to have a period of healthiness.  If she can put on some weight, increase her appetite consistently, and if the swallow study shows no aspirations, then we can table the discussion of a feeding tube for now.  However, in the meantime, her pediatrician, nutritionist and we are going to be monitoring her eating habits, appetite and weight loss/ gain very closely until then.  She will have to maintain a very upward and unwavering curve, plus eliminate her feeding and swallowing difficulties and aspiration for us to completely eliminate the possibility of a G-tube for Elizabeth.  However, the chances of the G-Tube being a reality for Elizabeth and for us is likely unavoidable for many reasons.  

This appointment alone overwhelmed me, and the Cleft/ ENT team were very supportive.  The team recommended eliminating milk from her diet and moving to all Pediasure.  Currently, she is getting 1 Pediasure a day, but they do not feel that is enough.  In order to bulk up her protein, calories and nutritional intake we are moving to Pediasure instead of milk as our new plan.  This should help her weight gain, and Pediasure is slightly thicker than whole milk so it also reduces the risk of aspiration.  They also recommended finding any means necessary to increase her overall calorie intake, which can include:  adding butter to her food, feeding her pudding and other high calorie foods, adding more pureed protein to her diet, etc.  Over the weekend, I traded high chairs with my grandmother.  The high chair that my grandmother has is much more supportive than the one that we have here at the house, so we just swapped chairs.  So, we are hoping, even thought it probably sounds odd, that the different and more supportive high chair will help her eating habits improve.  At this point, no matter how odd it may seem or sound, we are committed to doing anything that will increase appetite, increase her nutritional intake, increase her weight, and reduce aspiration.  We are going to put on a good fight to avoid the G-Tube... by any means necessary!  The team agreed to give us some time, and we are going to use it wisely to do everything we can that we are not already doing for her. 

Rheumatology

After that appointment, we had an appointment with Rheumatology.   Due to some of her rashes and other symptoms, it was recommended that we have a Rhuematologist evaluate Elizabeth. So, we went to the appointment.  After a thorough review of her history and an exam of her rashes and joints, the Rheumatologist concluded that at this time she does not think it is anything that is related to Rheumatology.  So, for right now, we can also eliminate that department from our list.  This is always good news.  As hard as the discussion was about the G-Tube in the middle of our day, the fact that the day began and ended with good news made it a win in my book.  

Tuesday 1/13 Appointments:

Our next set of appointments were on Tuesday, January 13th.  That day, we were scheduled to see a Cerebral/ Cortical Vision Impairment specialist, Dr. Christine Roman-Lantzy, at the Pediatric View Institute at West Penn Hospital.  We were also scheduled for follow-up visits with her Diagnostic Referral doctor and her Neurologist. As we drove to West Penn, I could not help but remember all of the times that I drove my sister Emily down to her dorm at nursing school.  

Christine Roman-Lantzy, Ph.D.-- CVI Specialist

The appointment with Dr. Roman-Lantzy was super informative, and I was so glad that our vision therapist recommended her to us. At this visit, Dr. Roman-Lantzy performed an evaluation to determine if Elizabeth's vision issues could be related to a disorder known as CVI, or Cerebral/ Cortical Visual Impairment.  She had Elizabeth perform several tasks, and we discussed her medical and visual history.  A Neonatologist from West Penn also sat in on the visit, and he provided insight and gave us some opinions on many of the vision and other issues that we have going on with Elizabeth. He was very concerned about the overall white matter loss in her brain.   Both of these providers were very helpful, compassionate and informative, and we have again added some wonderful members to Elizabeth's team.  Elizabeth's Vision Therapist also attended the appointment to share her input and evaluation results.  

Dr. Roman-Lantzy concluded her assessments and shared the results with us.  The results added another formal diagnosis to our list:  Cerebral/ Cortical Vision Impairment or CVI.  Dr. Goldstein, her neurologist and the Mitochondrial Disease doctor at CHP, felt that based on Elizabeth's vision history and the results of her brain MRI that Elizabeth had CVI, and Dr. Roman-Lantzy also confirmed it based on her assessments.  The links below provide additional information on CVI, and if you want more information you can check them out.  CVI is a vision/ neurological disorder that causes visual impairment.  In CVI, the eyes are functional, but the individual has issues with their vision due to problems in the brain and problems with the way the brain perceives and interprets visual stimuli.  Early vision therapy can help to increase Elizabeth's visual potential, but because CVI is neurological there is no cure and there is nothing that will permanently reverse or correct it.  Her glasses do help her to see better, but her glasses may eventually not help to improve her vision.  It is possible that she will be able to have vision that is very close to normal in the future, but it is also possible that she will never have normal vision. 

Children with CVI make the most gains, in terms of visual progress, in the first 5 years of life.  So, after Elizabeth ages out of Early Intervention, we will have to consider transitioning her to a program or preschool that specifically addresses visual accommodations and programs for individuals with CVI.  We will also have to make sure that when she is school age that her IEP (Individualized Education Plan) contains the visual accommodations necessary to help her meet her visual needs.  Her need for visual accommodations will be lifelong, just like her having CVI, but the extent of the accommodations needed will depend on the progress she is able to make.  So, once again, we are going to provide her with every possible opportunity to help her gain visual progress.  We are already starting to check into programs and preschools that have specialized programs for students with CVI.  We are planning to take her to Boston Children's Hospital this summer to see Dr. Janet Soul, who is a CVI expert, for her to consult on Elizabeth and offer additional opinions and suggestions on how we can best help her to make progress with her CVI.  We will also likely be enrolling her in a CVI research study in Pittsburgh. The following links contain more information, if you care to read it:

http://www.childrenshospital.org/health-topics/conditions/cortical-visual-impairment

http://www.aph.org/cvi/define.html

I was so glad to have had the opportunity to meet Dr. Roman-Lantzy.  She will be a great addition to Elizabeth's team.  She is an expert in CVI, and she was able to not only confirm the diagnosis but to offer us several suggestions for ways to provide Elizabeth with the best opportunities for visual growth and progress.  She was very impressed with Elizabeth's determination, curiosity and motivation, and she praised us for our efforts.  We will be following up with her in August.

Diagnostic Referral Follow-up:

After leaving West Penn, we headed over to Children's for our last two appointments.  They were both pretty mild, and I was glad for that.  Dr. Brown, Elizabeth's Diagnostic Referral doctor, discussed with us the concerns about her weight loss and slow progression of weight gain.  She also shared with us that she would like us to consult again with the Feeding Team for additional suggestions on how to increase appetite and nutritional intake safely.  Dr. Brown agreed to help us coordinate this visit, and she said she will contact us once she has that arranged for us.  It is really great to have her help with everything that is going on.  Dr. Brown not only adds a diagnostic angle to the team, but she also helps to coordinate all of these different departments and all of the information. 

Neurology Follow-up

Our last appointment on Tuesday was a follow-up with one of her Neurologists, Dr. Safier.  We discussed the appeal on the genetic testing, why that testing is important, and some other recent symptoms.  Elizabeth has recently started having tremors in her hands and feet.  Dr. Safier noted that we should record these episodes and email them to him.  He also discussed with us that one of the reasons why the genetic testing is so important is because the results will hopefully shed some light on the overall white matter loss in Elizabeth's brain.  At this point, her doctors are questioning whether the white matter loss is due to a genetic syndrome that is progressively deteriorating her white matter, or is it one that causes white matter loss, or did she suffer some type of oxygen deprivation that caused trauma in her brain.  The overall white matter loss is striking, and it is another reason why we are trying very hard to take her to both Boston and San Francisco this summer to specialists in the field of white matter loss. Dr. Safier also said that we can decide in the future to follow-up with either Dr. Goldstein or him, and that we don't need to follow-up with both of them.  He and Dr. Goldstein are both Neurologists at CHP, and they work very closely together. So, no matter which one we choose to continue to follow-up with they will both still be involved in her case.  I like them both, so I am glad that they will both be involved no matter what. Here is an article about why the white matter in the brain is so important, and hopefully it will help you to make sense of why this is so alarming to her doctors:

http://www.dana.org/Cerebrum/Default.aspx?id=39152

As glad as I was for the formal diagnosis of CVI, and for the relative ease of the two follow-up appointments on Tuesday afternoon, I was feeling very overwhelmed by everything.  The CVI diagnosis was a big step for us in solving Elizabeth's puzzle, but it is also difficult to think about your child having a life long condition that basically will restrict them in so many ways.  The CVI also compounds her Sensory Integration/ Processing Disorder, since vision is such a prominent sense that we rely a lot on as human beings. It could be worse, but it is still something that will be an added challenge to an already growing list of issues.  I knew, though, that Wednesday was going to also be more information.  So, I went home and snuggled with Celtan and Elizabeth, and began to try to process what we had learned in the past few days while preparing for Wednesday.  Elizabeth has been trying to crawl, so it is great to see her try to do those things.  Progress is Progress after all!

Wednesday 1/14 Appointments:



On Wednesday, January 14th we had two appointments at CHP:  GI and Immunology.  By all accounts, several of her doctors felt that Immunology was going to be a wealth of information for us, especially since lab results are showing a deficiency in her immune system.  So, I made sure that I had my head ready to absorb more information, and I made sure that I grabbed an extra pen to be able to have enough ink to write everything down. I always take notes when we are at appointments.  It helps me to remember things and to keep focused on the important points. 

Gastroenterology (GI)

Our day started with an appointment in Gastroenterology. We were referred to them because of Elizabeth's issues with diarrhea, weight loss and appetite issues.  The GI doctor, Dr. Lindblad, reviewed Elizabeth's chart, examined her closely, took a stool sample to check for occult blood in her stool.  Then, he asked me what my major concerns were for Elizabeth.  I told him that I was most concerned about the current discussions about a G-Tube, her recent changes in appetite and recent issues with weight loss. He also concurred that his greatest concerns were about her weight gain.  He said that he feels that she is a very good candidate for a G-Tube, and he said that she would benefit from one sooner rather than later.  Specifically, he said that her slow progression of weight gain over time, her low body mass index, the fact that she has never gotten her weight above the 5th percentile, and that her height to weight ratio was so low indicated that a G-Tube is necessary on a nutritional and well-being standpoint. The safety and aspiration issues aside, the GI doctor feels that a G-Tube is in our future.  He also has concerns about the possibility of Cystic Fibrosis and Celiac Disease due to her symptoms and some lab work results.  He ordered several blood tests and sent us home with various stool collection kits.  The GI doctor also ordered a Sweat Test, an Upper Endoscopy, and a Flexible Sigmoidoscopy to test for Cystic Fibrosis and Celiac Disease.  He also prescribed a medicine for her called "Periactin," which should help to increase and stimulate her appetite.  The GI doctor also agreed that Elizabeth should switch from milk to Pediasure.  I expressed concern that when she has Pediasure regularly then she is so full that she doesn't want to eat anything else.  He assured me that was perfectly fine, because she is getting adequate nourishment from the Pediasure.  He also said that if she is full on the Pediasure to consider anything else that we feed her by mouth a bonus.  I was glad for his through assessment, honesty, input and willingness to try to find additional answers to some of her symptoms.  We will be following up with him in March. 

Immunology

We left GI and headed to our Immunology appointment.  There we met with Dr. Allison Larkin and her team.  She reviewed Elizabeth's lab results and medical history.  She also examined Elizabeth closely.  We were initially referred to Immunology by Dr. Goldstein after lab results showed that Elizabeth's Immunoglobulin A (IgA) was low.  Dr. Goldstein wanted Dr. Larkin to give her input on that result and how it relates to Elizabeth's overall puzzle.  Dr. Larkin said that at this time the low IgA result was not super alarming to her, especially since her other Immunoglobulin counts were normal.  Even though the low IgA shows that her immune system is deficient, it does not mean that her entire immune system is deficient.  Dr. Larkin also explained that they will watch her IgA counts until she is around the age of 4.  It usually takes about that much time for a person's immune system to fully regulate and establish itself.  Dr. Larkin ordered a series of blood tests to take a closer look at her immune system and to determine just how well it is working.  She also ordered testing for some autoimmune diseases that they are suspecting based on previous lab results, other symptoms, etc.  I appreciate Dr. Larkin and her tenacity.  She had a lot of really good insight into some of the testing, further exploration, and other ways into helping us put together the pieces and find some answers.  Dr. Larkin asked if she could petition the insurance company for some very specific and expensive testing to rule in and out some big lingering diagnoses, as well as contact Genetics and Neurology to also get them on board.   I really liked her approach.  Her feet-first, jump right in and help us attitude.  In fact, pretty much all of Elizabeth's doctors are like this.  This is not necessarily unique, but there was something about her energy about it all that was refreshing and gave me hope. 

One of the tests that she wants to run is called a FISH Test. It is a specific type of genetic testing that is accurate and efficient in diagnosing 22q11 deletion disorders.  This is still a type of syndrome that keeps being brought up in different departments based on her features, symptoms and other results.  So, this test would help us to rule a 22q11 deletion disorder in or out definitively. 

Another type of testing that Dr. Larkin would like to order is a set of lab work to test for a disorder known as Ataxia Telangiectasia or AT.  The diagnostic question of AT being an explanation for many of Elizabeth's symptoms and other findings has been brought up in several departments.  So, this was not new information for me, even though I really wish it was not something was going to keep coming up.  Not that we really want any type of diagnosis, some days I still wish that someone would tell me that this was all a big mistake and that she is fine, but we really don't want it to be this.  AT is a rare, progressive neuro-immune disorder that causes rapid cell death and is degenerative.  It also makes you around 1000x more likely to develop cancers, due to rapid cell death feature of the disease.  As much as we want answers, and as much as we know that at this point we aren't likely going to get an answer that is easily or solvable at all, we still obviously don't want AT to be our answer.  However, since it keeps getting brought up, I have decided to educate myself on it.  If this is it, then it is better to be prepared.  If the testing comes back and it is not AT, then I will rejoice even more knowing that this terrible rare disease is something that my child does NOT have at all.  There is some very specific genetic and tissue testing for AT, which is expensive, so Dr. Larkin is going to ask the insurance company if they will be on board to just allow us to test for AT and rule it in or out definitively.  Here is a link with more information on AT, and I'm sure after reading it, you will understand why we are hoping and praying that this is not our answer:

http://www.nlm.nih.gov/medlineplus/ataxiatelangiectasia.html

The genetic testing ordered initially is called a Microarray, and it will take a very broad look at her genetic makeup.  We should have a formal decision by the middle of next week on the approval of this testing.  Even though there is a clear need to run this type of genetic testing, since it is so expensive the insurance company needs documentation to convince them as to why it is necessary, and why it would be helpful to the greater picture of Elizabeth's health.  We have more than provided them of that, and the doctors are confident that they will see it our way.  As tired as we are of all of this lab work and other testing, these very specific tests for AT and the 22q11 deletions are very specific and efficient ways for us to be able to rule these disorders in or out.  So, I appreciate Dr. Larkin taking the reigns and moving forward. 

As we left the Immunology appointment, I was feeling a mix of emotions.  It is good to be finally getting some answers and directions.  However, as we have said all along, sometimes the answers we receive are not the answers we want.  I was telling my coworker, Jen, the other day that I just wish I could crawl in a hole and when I resurface find out that this was all just a bad dream.  Instead, we are tunneling through this seemingly endless rabbit hole of more departments, more tests, more questions, and answers are slowly rolling in but the puzzle of Elizabeth overall continues to remain unsolved by everyone on her team.  This is one reason why we are seeking other experts in these areas of concern, because somewhere someone is going to look at Elizabeth and all of her testing and have that "Ah-Ha" moment that puts it all together.  I believe that in my heart of hearts, and so we are going to do whatever we can to get her to any specialist who can maybe add some insight to our Elizabeth.  Dr. Larkin and I discussed us wanting to take her to UCSF and to Boston Children's Hospital this summer to see some specialists in Neurology.  She has colleagues in both hospitals that she said she will link us up with just to have their eyes and brains pan all of this information and help us, hopefully, to plug in pieces to the puzzle.  It may seem like a hopeless cause, a pipe dream, but we don't have anything to loose, and Jason and I agree that the more insight we have the better.

Mom and I left Immunology and headed to the lab. We finished off our day with some more blood work.  Elizabeth had around 15 tests drawn that day.  Thankfully, it went smoothly.  Elizabeth is such a trooper.  She never cried, never fussed, and was so good as they drew all of that blood.  She is so good, happy, and just never ceases to amaze me. She is truly a miracle and a blessing, and even though this whole ordeal just plain stinks, we are so blessed to have her in our lives. We fought so hard to get her here, and we will continue to fight to get her whatever she needs to give her the best life and health possible. 

Ugh, not again!

When we got home that day, Elizabeth had a total meltdown.  Honestly, I wanted to have one, too.  I ended up having to take her upstairs at mom and dad's house and sit in a dark room and rock her to calm her down.  I think that she was on total sensory overload, was very tired, and I detected the hint of a fever.  As the evening progressed, she started sneezing, eyes started watering, a tiny cough started, and then the sheets of snot started flowing out of her nose.  At one point she was choking on her snot.  It was coming too fast for her to swallow, and she also doesn't know how to blow her nose, plus her coughs are rather ineffective at times due to her hypotonia.  Jason and I spent the rest of the evening cleaning off her face, snuggling her, and trying to make her comfortable.  It was clear that she was getting sick, again.  She has yet another respiratory virus.  They did test her for the flu, and thankfully it was negative.  She had the flu shot, so I figured it actually being the flu was unlikely, but you never know.  Last night, she tried to jump in her jumper, but she mostly just laid her head down.  We are just watching her closely to make sure she doesn't get any worse.

Final Thoughts



So, I hope that your brain didn't explode from all of this information.  I know that it took me a while to write this, because I felt like my brain was going to explode.  Jason and I wanted to wrap our heads around all of this, and inform our immediate families first about most of this, before we posted it on here.  Despite of the good news and the bad, we are determined to remain positive and hopeful.  Yet, we also want to maintain a balance of realism.  Its a fine line to walk being both realistic and positive at times. We also are blessed with our support system of family, friends and followers, as well as our prayer warriors.  We appreciate knowing that many people are praying for Elizabeth.  Many people have asked if we care if she is added to their prayer list at church, and we welcome that idea.  Elizabeth is truly a miracle, and she is proof of the power of prayer, and we appreciate all of the prayers, happy thoughts, positive energy and all of those things that can be sent her way.

I want to close with a recent dream of a family friend that I feel reinforces the abundance of blessings that we have despite all of this uncertainty.  Melissa Campbell, who I have known for several years because her daughter Kayla is friends with my sister Holly, shared a recent dream with me on Facebook.  It is funny how we have dreams about people, and my personal theory is that we do this because what we dream is meant as a message for that person.  Even though the message may not make sense at the time, it is our subconscious mind connecting us to each other.  In her dream, she said that she was making caramels in her kitchen.  She decided to walk outside for a minute to get some sun, and she turned around to discover the caramel was running like a river behind her into the yard.  Melissa was upset about having to clean up the mess, and she said that I came along in her dream, noticed the river of caramel, and said, "No, this is wonderful!  The kids will love it." So, I  started to gather the caramel and give it to them.  Melissa said that other people in her dream saw me doing this and joined to help me.  As Melissa told me of this dream, she said that she realized that the caramel, a river of milk and honey, was symbolic of abundance of blessing, words of encouragement and possibility.  She wanted to pass all of those things on to us and to Elizabeth.

I was more than touched by this dream and by Melissa sharing it with me. I feel that this river of milk and honey in her dream is not only symbolic of the abundance of blessings, encouragement and possibility, but it also is symbolic of Elizabeth.  She continues to amaze us.  She continues to amaze her doctors.  When doctors see the brain damage and white matter loss present on her MRI before they see Elizabeth, they expect to see a totally different kid.  It amazes them that she can do all of the things that she does despite a clear deficit in her brain structure and function.  Elizabeth herself is an abundance of blessings in our lives.  She fills us with encouragement and the possibilities with her are really endless.  Despite what our final outcomes or diagnoses may be, she has filled our lives with countless rivers of milk and honey.  We are so eternally, humbly, and forever grateful that we have her as a daily reminder of blessings.  Even though some of the news is bitter, and hard to swallow, and it makes us sad and angry and all things in between, we continue to see that river of blessings overflow.  This river of milk and honey also goes beyond Elizabeth and it includes all of you.  You are all also a river of milk and honey to us.  Your support, encouragement, prayer, following the blog, asking for updates, etc. all mean a great deal to us.  Elizabeth's possibilities are endless because of the support that surrounds her.  Thank you to all of you for helping us along the way and for being a part of our journey.

Just to add a bit of sweetness to your day, here is a picture of Elizabeth's crawling attempts, and there is also a picture of Elizabeth and her cousin, Jade, in their matching outfits at church.