What’s next on the agenda?

Could the world just stop for a moment so that we can catch our breath around here?  I am staring at my calendar thinking that we are going to need to schedule in some serious fun this month as it is going to be a medically bogged down next few weeks.  I took the weekend, and last Friday, and today off from making any phone calls to schedule appointments for Lucy.  I just needed a break from all of the planning, but now I am feeling like I need to get things done and scheduled so that I can get them off of my mind.  I need to schedule Lucy’s 24 hour EEG.  We see neurology again at the end of October so it would be beneficial to have the results of this study by then.  I also need to call interventional radiology(IR) at CHOP and DuPont and decide who, where, and when are we going to place her GJ tube.  We will hopefully make a decision on this soon.  Drew and I have pretty much decided that the GJ is the way to go with Lucy, but these decisions are never easy.  We have several options we need to make with the GJ tube: do we want her to have a GJ button or a tube, and do we want it done at DuPont or CHOP.  GJ tubes or buttons need to be replaced every four to eight weeks according to our GI who happens to favor the tube over the button, and they have to be replaced in IR under fluoroscopy so that they can thread the tube into the jejunum.  This means that we will have to have regularly scheduled visits to the hospital to have this replaced.

Sophie’s expression says it all!

Lucy is scheduled to see a new pediatrician next week who we are hoping will be willing to work with our existing pediatrician and co-treat Lucy.  Our current pediatrician does not participate in the PA Medicaid system.  Lucy’s medical assistance requires referrals for just about everything, and since we want to utilized her secondary insurance we need to work with the system.  Our primary insurance is a PPO ,and therefore does not require referrals.  Apparently, it doesn’t matter that we pay extra for a PPO option, Medicaid has strict procedures.  Our should I say hospital billing has strict procedures.  Can you tell that I am exercising tremendous restraint while writing this post.  For those of you with PA Medicaid who use it as your secondary insurance, how do you get around the whole referral thing? Leave a comment at the end of this post if you have any advice or answers.   The process of getting Lucy into this new pediatricians office has not been easy, they would not schedule an appointment until they had received  all of her medical records, I kid you not.  Lucy is not your typical case and we are sick and tired of having to start from the beginning with new doctors.   Also we are very happy with our current pediatrician and have no desire to switch her to a new pediatrician.  Have I mentioned how terrified we are of any sort of nationalized health care.  Don’t be fooled, we already have such a thing and we are jumping through hoops right now to get it to work for our Lucy’s needs.   Hopefully things will work out for Lucy’s best interest.  I am keeping my fingers crossed, saying a few prayers, and even holding my breath that this will work out.

Just thought I’d throw this picture in for fun!

Also on the agenda this month is metabolism and genetics, cardiology, and nutrition all on different days mind you, and   we have various therapies three times a week.  Oh yeah, don’t forget that we have three other beautiful, just as demanding, but thankfully not so medically needy children to love and take care of as well.  Like I said we are going to need to schedule in some serious fun when all is said and done!  

A Few Things We Can’t Live Without

We just received our monthly medical shipment from our UPS guy yesterday.  He looked like he was running back to his truck to get another box, so I asked him if there was more.  He smiled back to me and said, “that should last her another month don’t you think?”  Funny thing is I have never told him what the boxes are for, I guess the enteral feeding department label on the box gave him a clue.

Three times a day I administer various medicines Lucy.   All of her meds get pushed through her g-tube,we use our fair share of syringes.  We do try our best to rinse and reuse them as often as possible.  Twice a day we mix up Lucy’s food in batches that can last for up to twelve hours.  We use ice packs to keep the milk from spoiling during those twelve hours.   It is really hard to know  if the milk is spoiled since it smells rotten the moment you make it.   Experience has taught me that in order to keep the breast milk fat from separating, the formula and the breast milk need to be at the same temperature when they are mixed.

 

I no longer use our changing table to change diapers, it has become a medical storage unit of sorts.   Most of these items get shipped to us on a monthly basis. 

All of these items are necessary for Lucy to grow and thrive, but the one item that we can not live without in our house has to be

Lucy’s binky!

The Way Energy is Made

I am going to be very specific for the purpose of this video, Lucy has a  Complex III OXPHOS defect.   Hopefully this video will help to explain what this means.

Since Getting a Mito Diagnosis…

 

Has our life changed much since getting Lucy’s diagnosis, technically not a whole lot, emotionally a lot!  Technically we still need to see all of the specialists(eleven at last count) that Lucy has seen before plus some.  Our neurologist has been communicating with Dr S. in Atlanta about Lucy’s diagnosis and what the dosing recommendations are for the Mito cocktail.  Dr. S is not a clinician, he is a diagnostician and researcher.   He consults with other doctors about the patients he has diagnosed but he does not see these patients for the care and maintenance of their disease.  We are very glad that he devotes most of his time to researching mitochondrial disease, he is a brilliant man who we believe will help find a cure for this disease someday.  We are in need of finding a Mito specialist for Lucy, and that is what we are struggling with currently.  Our metabolic doctor and geneticist at CHOP are knowledgeable with mitochondrial disease, but are not mitochondrial disease experts.  Mitochondrial medicine is a very specific specialty, as you can imagine, and there are only a few doctors in the country that are considered Mito experts.  Hopefully, we will be able to get all of Lucy’s Mito needs met at CHOP or at DuPont, but for right now we are feeling like we need to see a mitochondrial disease doctor.  During the last conversation that I had with our geneticist at CHOP, he said that CHOP was in the final stages of recruiting two of the country’s leading Mito specialists, we haven’t heard anything more about this.  We are scheduled to see Lucy’s metabolic doctor on October 13th, hopefully at that time we will know more.

Since getting Lucy’s diagnosis we have made efforts to ensure that Lucy’s medical needs will be covered no matter what happens to our primary insurance.  Lucy diagnosis is lifelong and she will most likely require more medical care in the future than she currently receives.  National health care is a very scary concept to our family as we rely on our coverage now more than ever.  We sincerely hope that more thought goes into the government’s plan for nationalized health insurance. 

Lucy has started on some of the supplements in the Mito cocktail.  The biggest side effect of the medicines so far are found in her diapers, if you know what I mean.  We were able to cut back on the Miralax  for a while, but now she is  back to her regular irregularity.  We are being careful to introduce each medicine individually so that we give her body a chance to adjust to each new dose or medicine.  One of our challenges is remembering to give Lucy her medicines three times a day.  I need to remember to set a timer.   

Drew and I are very aware of Lucy’s obvious issues, unfortunately we can not see what is going on inside Lucy’s body.  Because Mito can affect all major organ systems we need to look at getting a baseline on many of her major organs.   As a result, we are scheduled to see cardiology sometime in October.  We will also need to do annual hearing and vision testing as these are areas that can be affected by this disease as well.  Lucy’s neurologist is following her  neuro muscluar issues closely as well as her suspected seizure activity.  We are going to do a 24 hour EEG sometime in the very near future, I am not looking forward to this one at all.  We follow with GI and nutrition on an almost monthly basis.  Currently we are getting ready to switch Lucy’s PEG tube to a gastrojejunal tube (GJ tube).  We have some options that we need to consider when it comes to this switch so we are still in the decision making process with this.  Her tube site looks really good right now, we want to make this switch as soon as possible before we have another infection on our hands, or should I say Lucy’s stomach.

Emotionally we have our ups and downs!  Getting a diagnosis DOES  help, even thought it is a diagnosis we never wanted for our baby girl.  We can not look back, but must look forward.  There is nothing that we could have done differently to make the outcome any different, we have no regrets. What is the prognosis for this disease?  We do not know, it is hard for even doctors to speculate.  There are many people who live fairly normal lives with mitochondrial disease and there are others whose lives are severely affected as a result of having mitochondrial disease.  We feel blessed to have been chosen to be Lucy’s family!  Our goal is the same for Lucy as it is for Jack, Megan, and Sophie; we will provide them with as much love and support as we possibly can, so that they in turn can have the best possible life.  

Mito Awareness Week September 20-26, 2009

This week has recently been proclaimed Mito Awareness week. I thought I would dedicate this week to our Lucy Grace and to all who are affected by this disease. Before Lucy was born I had never heard of Mitochondrial disease. Now I feel like I can’t learn fast enough about this disease that affects our little Lucy and so many others. I will try throughout the week to share information about mitochondrial disease and what it means to our family. I thought I would share information taken directly from the United Mitochondrial Disease Foundation’s web site www.undf.org. I could not even begin to explain the information as clearly and accurately as they have. We very much appreciate you taking the time to learn about Mitochondrial disease, a cause that is very near and dear to our hearts.

The following information was taken directly from the UMDF web site at www.umdf.org

WHAT ARE MITOCHONDRIA?

Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.

WHAT IS MITOCHONDRIAL DISEASE?

Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.

Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.

Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.

How does Mitochondrial Disease affect the body?
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease. The affected individual may have strokes, seizures, gastro-intestinal problems, (reflux, sever vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.

WHAT CAUSES MITOCHONDRIAL DISEASE?

For most patients, there is a genetic mutation in either the mitochondrial DNA or the nuclear DNA. The mutation may have been inherited from the mother or from both parents, or it may represent a spontaneous mutation. For most patients with mitochondrial disease, the genetic mutation has not yet been identified.

There are environmental factors, even certain medicines that may interfere with the mitochondria and result in symptoms.

HOW COMMON ARE MITOCHONDRIAL DISEASES?

Every 30 minutes a child is born who will develop a mitochondrial disease by age 10.

At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.

Mitochondrial disease is a relatively newly diagnosed disease – first recognized in an adult in the 1960s and in the 1980s for pediatric onset cases. It is greatly under diagnosed and the true prevalence is difficult to determine.

Research has consistently shown that mitochondrial dysfunction is at the core of many very common illnesses and chronic conditions of adulthood. These include: Alzheimer’s Dementia, Parkinson’s disease, diabetes, hypertension, heart disease, osteoporosis, cancer and even the aging process itself. Furthermore, autoimmune disease such as multiple sclerosis, lupus and rheumatoid arthritis appear to have a mitochondria basis to illness.

When is someone with Mitochondrial Disease at the highest risk?
The child or adult is at highest risk for neurological and organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.

WHY IS RESEARCH SO CRITICAL?

There are no known treatments or cures for mitochondrial disease.

Mitochondria may play a far greater role in human health than scientists and doctors have realized. Any health concern that is an energy problem could be related to the mitochondria.

Further research into the mitochondrion and primary mitochondrial diseases (those due to genetic defect) would benefit millions of people. It would offer hope to the thousands suffering from this debilitating and often fatal disease and provide a broad range of new therapeutic approaches for attempting to treat these other very common and incapacitating illnesses and conditions.

MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.

Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:

• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.

SUCCESS TO DATE

The National Institutes of Health (NIH) recently established a cross-cutting research initiative on the mitochondria that cuts across all the NIH institutes (an ROI Project.) In one of his last official actions, former NIH Director Dr. Zerhouni, recently testified before the House Energy & Commerce Committee about the importance of cross-cutting research initiatives as being the key to future advances in science and medicine.

Congress has also expressed its intent to further explore the far-reaching role that mitochondria play in a wide range of diseases. Report language included within the 2008 Labor, HHS Appropriations legislation “…encourages the NIH to intensify its research efforts into primary mitochondrial disease, which is also implicated in numerous other diseases such as Parkinson’s, Alzheimer’s, heart disease, diabetes and cancer. The Committee understands that intensified research into primary mitochondrial disease will help to further understand these other conditions.”

While some steps are being taken, there is a lot more opportunity and promise that could be realized with greater financial resources. Interestingly, research in Europe and Asia is proceeding in a much more intensive manner. Recently for example, China established a mitochondrial university.

It is clear that research into mitochondrial disease offers hope to the millions who are afflicted with these other common conditions and diseases.

Wednesday

It is only Wednesday, wishing it was Friday.  It has been a very LOOOOOOONG week so far. Every night has been filled with commitments and activities.  With three in school this year, we have attended three back to school nights in the last few days, and filled out what seems like three hundred pages of emergency contact forms, reading logs, homework assignments, and PTA forms.  In the last week I was asked from one of Lucy’s social workers if we have considered any plans for Lucy’s future education, to which my eyes bugged out and my jaw dropped.  The answer would be NO, not really, I mean sure we are immersed with school everything right now and I have thought of how much more stressful it will be when and if Lucy goes to school.  But NO, I am just trying to take things one day at a time with her.  I don’t mean to imply that Lucy will not be going to school one day, we hope very much that she will, but I don’t remember having any plans yet for any of our kids future education when they were Lucy’s age. 

If I sound overwhelmed, I am.  We have our hands full right now adjusting to all of the new changes in our routine.  I know things will get easier with time, but right now we are feeling overwhelmed.  Now that we have had some time to process the events from Monday,  again we are reminded  how very fragile Lucy really is.  As if we needed a reminder, never take things for granted!   I think that we are going through the process of adjusting to Lucy’s diagnosis still.  We wonder if and when things will ever get easier?

Tomorrow Lucy has her eighteen month check-up as well as an appointment with her neurologist.  We have several issues that we want to discuss with her doctors and are hoping to get some answers and direction with things.  

The kids also start our marathon of music classes again tomorrow, they are all looking forward to it.  Lucy started her music class on Tuesday, and lets just say it did not go as well as I had hoped.  In her defense, we were recovering from a rough day the day before.  Regardless, I fear that her issues would have been the same.  Lucy has sensory processing issues that are challenging to say the least.   Add to that all of her other issues, and well it’s going to take some time to get her used to the class.

Life goes on…no matter what we will get through all of this!  After all,  it is our life!  Thanks for following us on this journey. 

P.S .I will post new pics soon, I promise.

An update on today’s events

We are home and looking forward to going to bed.  Lucy is home and sleeping like a baby in her crib.  Sophie is also sleeping as she had an exciting day riding in an ambulance and being spoiled by the ER staff at DuPont.  Jack and Megan had no idea what happened until just a few minutes ago when Drew and I told them.  They are so relieved that Lucy is doing better and that we did not have to be admitted!

Experience has helped us to learn what is normal and what is not normal when it come to Lucy.  Because of this I feel that I was able to react quickly to what Lucy’s body was experiencing.  We believe that the combination of her body being tired and the lack of nutrients put her body into metabolic crisis.  When this happens she becomes extremely floppy or hypotonic, she has starring episodes in which she does not respond, and she becomes dehydrated very quickly.  It is so freighting to see her get like this!  Thankfully she perked up after several hours on D10 solution and full feeds!   It was difficult to get labs on her today because she was so dehydrated, having labs drawn is very traumatic for her.  I wish there was another way!   All of her abnormal labs where typical abnormal labs for Lucy, nothing we are not already aware of.  Our experience with Lucy’s issues, knowing that she has mitochondrial disease, our very dedicated pediatrician, Lucy’s ER protocol letter, and the staff at DuPont helped to get Lucy back to baseline today, for that we are so grateful! 

I also want to say a huge thank you to all of our friends and neighbors who have come together to help our family in our times of need.  It means so much to us to know that you are there for us ready and willing to support us in so many ways.  I posted this warning before, knowing us can be hazardous to your cardiac health just ask our close friends and family.

Metabolic Crisis?

Thought I'd let you know what we are doing right now. I posted this on our mito forum and thought that I'd do the same here since we caused quite a stir in the neighborhood this morning. We are currently waiting for labs to come back. I'll post more later...



We have experienced what I believe to be the perfect storm. Yesterday we were out and about most of the day which meant no long nap for our excessive sleeper. Then last night sometime during the night her feeding set came disconnected form her g-tube, we fed the bed and not the baby, that hasn't happen for us in a while. Not sure how long she went without food, I checked on her last when I went to bed at 10 pm and didn't notice any problems. This morning she woke up at 8:30am soaking wet and smelling of vomit and Elecare. After bathing her I gave her a bolus feed of 40 ml of her Elecare, she normally doesn't tolerate a bolus so I had to be careful how much and how fast it went in. She burped and hiccuped when I did it but did not throw up, thank goodness. I then started her at her normal feed rate of 33 ml/hr and decided to take her and her sister for a walk. While out walking Lucy became extremely floppy and distant, she could not hold her head up, she kept falling forward. My neighbor called 911 and we were brought to the hospital where they connected her to D10 solution and tried to draw labs. She is a difficult stick but it's even worse when she is dehydrated, we have not been successful in getting all of the labs yet. We have an emergency protocol letter that outlines what the er needs to do in case of metabolic crisis. We are doing what it says and sitting her keeping a close eye on our little Lucy.

Where does the time go?

Again I am way behind in updating you on what has been going on in our lives.  I just can’t seem to find the time to complete a thought.  I am going to be lazy tonight and just write in list format some to the things/issues/stuff/happenings/goings on in the Marlett  house recently:

Sophie had her first day of preschool yesterday!  She has been anxiously awaiting this day, well I guess…all her life.  She was so excited to ride in Daddy’s car to preschool.  Drew used to drive Jack and Megan to preschool in morning and so the tradition continues(It works for me;).  Sophie ran out of the garage door yelling back to me, “Now Mom don’t be sad, you still have Lucy!  See ya!”

Megan and Jack both have new glasses that have  transitions lens, they love them.  They think they are so “cool”, I think they are slightly “dorky”.  They told me “all the kids at school like them, and they know what is cool Mom”.   My response to them,  “whatever?”  Oh my someone please stop them, they are growing up way too fast!

Jack came home from school on Wednesday with a VERY loose tooth, within seconds of him walking in the door it fell out.  Sophie saw all the blood in Jack’s mouth when he walked in the door and then saw the tooth fall out and said very emphatically that she was NOT EVER going to loose a tooth!

Here’s a BIG one, Lucy is taking independent steps! !!!!  Yes you read correctly, I started writing a post about this but haven’t finished it so I am going to tell you now just in case I don’t get to finishing that post anytime in the near future.  Words can not express how happy we are for our little one.  Mito is a disease of energy metabolism, some days are better than others, that’s just the nature of this disease.  All of her attempts at walking have really wore her out this week, but at the same time she does not want to sleep because she wants to practice her new skill.  Today all her walking  finally caught up with her, she slept most of the day.

After I posted about not having any doctor’s appointments this week or last I jinxed myself.  Last Thursday afternoon I ended up taking all the kids to our peds. office for round one of the flu vaccine thanks in part to their office calling me right away when the vaccines came in.  Lucy’s g-tube site was starting to look icky again on Thursday, how convenient we were already going to the peds office.   Fearing another infection we did a culture which indeed came back growing staff  and some other stuff again.  After the long holiday weekend her site progressively started to look worse.  Why do kids always seem to get sick over a weekend, or holiday, or a holiday weekend?   It looked oozy and yucky and was obviously painful.  On Tuesday when I went to lay her down for her nap her site started bleeding a lot!  With some quick thinking I called my neighbor who happens to be a nurse and asked if she would come and take a look.  In all honesty, I was probably a little more panicky sounding than that, it was a lot of blood.  She came with all three of her kids right away (amazing) and helped calm my nerves.  By the time she arrived the bleeding had subsided, she took a look  at her site and agreed that it did not look like normal granulation tissue, it looked unusual .  After talking with our ped. we decided that I should take Lucy to CHOP to see the GI stoma nurse practitioner.  On Wednesday morning I took Lucy back to CHOP  where the nurse practitioner looked at her site and thought it looked pretty unusual as well, sometimes I just wish someone would say, “oh, that’s so normal” when they  look at Lucy.  She talked with me for over an hour about g-tube sites and granulation tissue.  She was very compassionate and knowledgeable and I greatly appreciated all of her time and information, Lucy on the other hand did not.  She took silver nitrate to her site again and prescribed an antibiotic as well as trimcinolone cream to control the growth of the granulation tissue once the infection is gone.  She agreed that the sooner we can switch Lucy’s tube the better.  We are scheduled to see our GI in the next week or so, at that time we will discuss all of our options.

My sister came to visit over the weekend, we had fun staying up late and talking about “stuff”.  We did a lot of nothing and had a relaxing time doing it.  She watched the kids for us on Monday afternoon while Lucy took a nap.  Exactly twelve minutes after we left our driveway she called us saying Lucy was awake and that there was no way she was going into her room to get her.  Who knew someone so small could be so intimidating?  I told her to leave her in her crib as long as she was happy and to call me when she started getting upset.  Drew and I were just around the corner at our local Starbucks and could be home in a few minutes.   So there we sat trying to talk about everything while gulping our Starbucks and looking at the clock, not exactly what you would call a relaxing date but it was a date nonetheless.

We are looking forward to yet another weekend.  My grandparents are visiting us on their way back to Florida.  We are going to slow down and take the weekend to enjoy having them in our home, I just hope the rain stops tomorrow so that we can play outside.

I have fragments of posts that I have started over the past few weeks but have not had time to complete.    Hopefully you can look forward to reading a few of those in the the upcoming week or weeks.  I have so much I want to say but not enough time to write it down. 

School Days

School is back in session for our “big kids”.  I have to admit that I  have mixed emotions about school starting, I am sad that another summer is over and our freedom of doing what we want when we want to do it has ended.  School starting means we have to change gears and go back to a strict schedule again.  On the flip side, this year for the first time; I have to say that even thought I am sad about summer being over, I am happy to have a routine again.     It’s going to be a good year for them, I can feel it!  Jack is in the third grade this year.  How can I be the mother of a third grader?  His best friend since babyhood and he are in the same class together for the first time since preschool.  It’s a good thing.  Paul once said to Jack, “Jack you and me are like peas and carrots!”  They really are, they complement each other well and I  am so glad that they can share this experience.

 

Megan is in the first grade this year, she is gone from home all day for the first time in her life!  Megan has the same teacher that Jack had for first and and second grade and we are thrilled that she will be in this class for the next two years!  Half of her class knows Jack because he was with them last year, they have said to Megan that she looks like the girl version of Jack.  She loves school, especially being able to eat lunch at school.   I must confess that I miss having my “little mama” with me during the day.

Sophie and I have had some extra “special” Mommy and Sophie time this week.  On Monday she and I had a great time baking cookies and other goodies  for an afternoon snack for the kids, we played with puzzles, and went out to lunch together and Lucy too.  Lucy has been sleeping a lot recently, waking up for the day at around noon which gives Sophie and me some quality time.  On Tuesday morning she waved good bye to the kids and than turned around and said “Now we can have some special Mommy and Sophie time” and slammed the front door.  Sophie starts her preschool next week.

Lucy is not in school obviously, but we have therapy three times a week which is a commitment.  She is making progress and we are so proud of our girl!  She is really learning and retaining the signs we are teaching her each week.  It is so amazing to see her sign for help when she needs it!  Her six month review for therapy is coming up, when I think back we have really come a long way in the past six months. 

Next week we add after school activities to our schedule, at least we don’t have any doctor’s appointments scheduled.