Declan beginning of 2017

Since I haven't posted in a long awhile I wanted to give an update about Declan and how he has been.  He is turning 5 this month! I never thought we would get here, but it has gotten easier throughout the years.  He has plateau'd on some things and gotten worse in others.  We still quarantine ourselves during winter.  Everyone knows not to come near us if they are sick and I try to keep us as healthy as we can, but school and work don't help.  We have done great this season so far, only had the flu once and we got the tamiflu and kicked its butt quick.  The cold weather on the other hand has not helped Declan or us.  When the pressure is high it is the worst for him.  His whole body hurts and he can't sleep... which mean we don't get to sleep either.  We can't take him out when it is heavily snowing either.  Since I haven't learned how to turn into the hulk in order to carry his 300 lb wheelchair.  Maybe that can be my goal this year?  ha ha who are we kidding. So I am sure we are getting some cabin fever and may just go crazy.  So it was disappointing to hear the groundhog say 6 more weeks of winter.  I hope he is wrong.  I'm not sure if other kids like Declan have similar issues with the weather.  But cold is not our friend.
Declan is in his last year of preschool, and will be starting kindergarten in the fall.  Nervous is the word I would use, but I am positive he will do great.  He has been in preschool since he was three. Making friends where ever he goes.  He is talking much more but is still delayed so we have had speech therapy and are looking into getting some communication help with programs on tablets and such.  Look forward to those posts I'm hoping to get the ball rolling this year. We still have PT and OT therapies.  We are trying to maintain the movement he has, but those pesky contractors have given us a lot of trouble.  His right arm, elbow to fingers is where he has the most movement.  Due to an accident in August which broke his right leg femur we also found out both hips are dislocated.  They said it is normal for children like Declan that sit in a chair all day for this is happen. The pelvic bone flattens out and can't hold in the bone to keep it in place.  I still think it causes him pain and now he can not lay flat on his back so I wanted to talk to the doctors about putting them back in. Which mean hospital stay...ugh!!  His legs are still bad.  He is at a 45 degree angle and all we can do is stretch him and rub him down.  We've talk about surgery to cut the tight tendons but it will cause a lot of scar tissue so they don't like to do it until the child is 10 years old.  So we have some time.  We will be doing surgery on his right ankle though.  I don't know when but it is on the list to get done. Picture below:

right ankle turned in.

It isn't considered a club foot but that's what it looks like.  I don't know if this causes him pain, but we can't use the stander to help with weight baring and or the dafos on his feet.  It has progressed to an almost impossible location.  

His back, oh my his back I don't know if getting the Magec rods was good or not. I love the short 5 minute doctor's visits for the extensions every 3-4 months, but this poor kid can't keep his right rod connected to his pelvic bone.  Declan's bones are already soft and it doesn't take much for the clamp to get knocked off.  I've lost count how many surgeries this kid has had and I know we are in for even more.  The rods have helped a lot with his breathing though I can't argue that.  He has got a set of lungs for sure.  I also know if we didn't do something I think we would have lost him from all the pressure that was on his lungs.  The docs have us putting him on a bipap at night, and boy does he hate it!  We hate it.  It doesn't help him sleep better it makes him sleep worse.  Let me tell you almost 5 years of never sleeping through the night is rough and we value our sleep.  So when a machine makes things worse it is really hard to get on board to like it.  I think we will have a talk with the doc in the near future.  Some things you just have to say "stop, no more."  But I'm trying!!!  

I don't remember if I ever posted about Declan receiving his Gtube. We had to bite the bullet and take the plunge. When he got sick with pneumonia and we stayed in the hospital for a week they had to insert an NG tube through the nose and we couldn't get him off of it.  So we decided to go ahead and do surgery for the Gtube.  We've had a few ups and down with the it but overall it worked out well.  It is still very hard for Declan to gain weight and he is still on his own curve.  Following his own path.  Recently the hubby got a new job so that meant new insurance.  Turns out for some stupid reason United Healthcare has decided to not pay for any formula anymore, including those meant for gtube children.  Yeah stupid is a nice term.  So when we were looking at $280 a month for his formula out of pocket I went in search of something else.  I don't even remember how I came across it or why I remembered it.  A blended diet.  We use everyday foods, most of which I already have cause we eat them ourselves and use an industrial blender to puree the food and do bolus feeds throughout the day.  Well thanks to my mom and dad they gave me an early christmas gift, a Blendtec.  I love it!  It does a wonderful job.  It takes me about 10-15 mins to blend and cook Declan's food and put in a mason jar in the fridge.  Which we use throughout the day.  He gets 60-120 mls each feed and we feed him about every two hours.  It take about 5 mins to push it into his extension and we flush the line with warm water and done!  Over night we run water through his pump so he doesn't become dehydrated. There is a ton of help with support groups on facebook and I found a website called: www.blenderizedrn.com They can help anyone interested in starting a blended diet for their Gtube child.  Before we started the blended diet we could only get three cans of formula into him.  But with the blended diet we can get a whole jar into him throughout the day.  Therefor he is actually receiving more calories than before and I'm not going to be upset about that.  He can also eat what the family is eating spaghetti, meatloaf, chicken alfredo... doesn't matter, we just blend it!  I feel like he is eating healthier and staying healthier.  He will outlive us all.

one blended feed vs. it's equal calorie intake with formula

blending his food.

Even though we struggle we love this kid.  He is both frustrating and hilarious.  This is one wild ride we are on, and it is teaching us so much.  We have become a better family, we have become better people.  I may not be able to hang out with friends as much as I use to, or go to every party, but don't stop asking.  I'm still here just with a lot less free time.  Drop off some Dr. Pepper and a romance novel and I will love you forever!  
If you have any questions comment below.
Thanks for hanging in there with me!

Spinraza (A treatment for SMA)

Please note: I am not a doctor, I'm not telling you this treatment will work.  I am just providing information about spinraza. Talk with your doctor about the pros and cons of this drug for your child.  Do your research! 

Spinraza, it is a beautiful word to SMA families.  It's not a cure, but finally a treatment.  I'm so glad I was able to see this happen in my lifetime.  This means so much to the SMA community.  I'll try to post some videos of patients on this drug, and of course links.  Do your research, and I hope it will help you.
Unfortunately for us, Declan will not be taking this drug.  Since he tested negative for SMA but positive for one mutation with SMARD, this drug will not help him.  I'm hoping since we provided a treatment for SMA, one is close for SMARD.  May this treatment help the many, but our goal always and forever will be to come up with a cure. 

INFO:

• SPINRAZA is a survival motor neuron-2 (SMN2)-directed antisense oligonucleotide indicated for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients (1)
• SPINRAZA is administered intrathecally  (Intrathecal administration is a route of administration for drugs via an injection into the spinal canal, or into the subarachnoid space so that it reaches the cerebrospinal fluid (CSF) and is useful in spinal anaesthesia, chemotherapy, or pain management applications.)
• Initiate SPINRAZA treatment with 4 loading doses; the first three loading doses should be administered at 14-day intervals; the 4th loading dose should be administered 30 days after the 3rd dose; a maintenance dose should be administered once every 4 months thereafter.
• SPINRAZA is an antisense oligonucleotide (ASO) designed to treat SMA caused by mutations in chromosome 5q that lead to SMN protein deficiency. Using in vitro assays and studies in transgenic animal models of SMA, SPINRAZA was shown to increase exon 7 inclusion in SMN2 messenger ribonucleic acid (mRNA) transcripts and production of full-length SMN protein. (meaning it replaces a missing protein.) 
• Cost:    Spinraza, will not come cheap — and, by some estimates, will be among the most expensive drugs in the world.       Biogen, which is licensing Spinraza from Ionis Pharmaceuticals, said this week that one dose will have a list price of $125,000. That means the drug will cost $625,000 to $750,000 to cover the five or six doses needed in the first year, and about $375,000 annually after that, to cover the necessary three doses a year. Patients will presumably take Spinraza for the rest of their lives. (I am unable to find at this time what the actual costs are.)

______________________WARNINGS AND PRECAUTIONS ____________________
 • Thrombocytopenia and Coagulation Abnormalities: Increased risk for bleeding complications; testing required at baseline and before each dose.
• Renal Toxicity: Quantitative spot urine protein testing required at baseline and prior to each dose.


VIDEOS:

There are many more videos out there about how this treatment is working.  I love it!!!


LINKS:

Farrell Family
spinraza
prescribing-information.pdf
curesma
Biogen’s SPINRAZA
https://www.nytimes.com

Celebrating the little things

Here we are 19 months into the hardest, depressing, joyful, and educational 19 months I've lived so far.


   That was the sentence I saved from 3 years ago.  It's so amazing Declan is turning 5 in less than a month!  We can't help but to do a little dance and say HA! to all those doctors that said to prepare our selves. Like there was some sort of handbook for parents. "Best way to grieve..."  (face palm).  I don't think one can actually prepare one self to say goodbye to their child.  We never should out live our children, but it happens all the time.  Mom's and Dad's try to hold onto their children, their souls, and I think our souls actually cracks when we say goodbye.  So many things run through my head late at night.  How will I grieve? How will I love again? How will I still hold onto my other children?  How will my marriage survive?  Five years of me, fearing every cough, every hospital stay, every doctor's visit with more bad news.  But I will take the fear over the loss.  Because even though I fear daily for Declan, I can fight!  I would like to think in the flight or fight scenario I would fight till the death.  I'm just praying that Declan can tell me when he is done fighting so I never have to make that decision.  Until then I will fight, my husband will fight, our children will fight for their brother.  He isn't going anywhere.  
   Life is hard! It's depressing, and exhausting.  Parents try and try to make our children better than ourselves, while still adulting. The world is turning to shit and we are just trying to hold on to our little family, hoping that nothing will change.  It can consume you.  The hate especially, it's like a virus that spreads.  Now everything is online and it spreads faster.  Some change is good, some not.  I'm not getting into the world today, it would fill a book and who wants to read that!
   The title to this post is called celebrate the little things.  How do you celebrate the little things with your children?  Each child has something different to celebrate.  An "A" in science, yellow belt in karate, hearing your toddler say mom for the first time.  I had to wait four years to hear Declan say "mom", and it is still the sweetest sound.  I try really hard to celebrate the small things with D&K, to make sure they know I love them.  It is easy to get over shadowed with all of Declan's problems.  So some days the only thing that I am able to say to them are "I love you".  Everyday, day or night, I hope it's a habit we never get out of.  With Declan most things seem little, but are big for us.  Drinking out of a straw, and now he has moved onto drinking out of a cup, you have no idea how much work went into that for Declan.  Navigating through a store without hitting one thing... or person.... seems small, but it was a big deal for us.  How healthy he has been.  We celebrate what we can, and never give up.
   It feels like I'm painting this perfect picture of our family, and trust me when I say we are not.  We fight, we argue, we are lazy.  We have stepped it up for Declan, but he is actually easy to take care of.  Just different.  When I lay Declan down for a nap, he can't crawl out of bed time and time again.  Declan doesn't want to eat dinner? Okay that is fine, I just put it in his G tube.  He still has his four year old qualities, tantrums and all, it's just different.  We are not perfect, I'm not perfect.  We just don't quit.

Sorry this is short I'm trying to get back into the habit of blogging. Pictures below:

Owen Grady riding a raptor 2015

Yep we broke a leg... how does that happen?

you'll be cool but never as cool as me.

2016 a knight riding his horse.

companion animal Jack. 

I am batman! 

j/k I'm a fireman. 

August SMA Awareness 2014

SMA Candle lighting 2014

August is SMA Awareness Month 2014

                Spinal Muscular Atrophy it was such a big scary word when we first heard it.  Number ONE genetic killer of infants under two, 1 in 6,000 babies are born with SMA.  Spinal Muscular Atrophy (SMA) refers to a group of inherited diseases of the motor nerves that cause muscle weakness and atrophy (wasting). The motor nerves arise from the spinal cord and control the muscles that are used for activities such as breathing, crawling, walking, head and neck control, and swallowing.   SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. When the muscles used for breathing and coughing are affected and weakened, this can lead to an increased risk for pneumonia and other respiratory infections, as well as breathing difficulty during sleep. The brain’s cognitive functions and the ability to feel objects and pain are not affected.   

Scary right?  Let me tell you what SMA means to this family.

For starters how about determination: We do everything we can to help Declan, we quarantine ourselves during winter, we feed him as many times as we can, we get up all night long to turn him.  We are determined to keep him healthy.   Declan is two (and a half) and is still exceeding the doctors expectations.  I think he is just as stubborn as his parents and no one will tell him how his life is going to be.

Knowledge: Before SMA came into our lives we were blissfully unaware of the struggles of others in the world.  There wasn't much information on the internet and what you did find was all bad.  But with the sadness came newly formed friendships, and help from other struggling families.  I believe the knowing of  " YOU'RE NOT ALONE" helped us more than anything.  Declan is different with his symptoms and his mutated gene.  He doesn't match everyone out there.  But I know if I have a question or I need to rant I can count on these families to understand.  They understand the exhaustion, the fear, the humor and love that comes with SMA.  Now we know how blessed we are.

Humor:  You wouldn't think anything about these kids struggling with SMA would be funny, but holy cow Declan makes me laugh daily.   No he can't run up to me and tickle me, or laugh while saying mommy.  But Declan loves to laugh, and with how dark SMA can be we need to laugh.  Declan has a war cry.  His swords are straws and he always has to have two, but he will raise his hand up and let loose a loud and long war cry "AAAAHHHHHH!" before swinging down that mighty straw.  Or giving his sister kiss after kiss, or saying a word out of the blue, or he starts singing with the music on the radio.  This kid is magical, where ever he goes people smile, and if you're really lucky you will hear him laugh.  It's a beautiful sound and so very dear.  

Patience: I talk about this a lot, and there is a reason for it.  I am "short fuse mommy", I like things done quickly and correctly.  I love my sleep, and love my caffeine even more.   So when Declan came along and I gave up my sleep, and gave up the clean house, and yes even showers got postponed, I was a bit on edge.  Then I would look into these bright blue eyes that have so much love in them.  It's like looking into a soul of an angel so pure, so clean.  I would do anything to make sure those eyes stayed bright.  (don't get me wrong Declan has his devil moments, he has a temper too, and we don't always see eye to eye with one another, usually at 3am in the morning...)  I began to listen, and wait.  I've come to terms that my house will not be magazine worthy, and that my hair will always have that wilted "I haven't been to a salon in years" look, and my eyes will have that tired look to them.  I will tell you what I got in return.  Two years worth of physical therapy and Declan can move his right hand and arm all the way up and even lift his shoulder off the floor.  He is wiggling his toes, and working on kicking his legs.  He is reaching for me!   He has taught us anything can be accomplished with TIME.  We don't have to rush, we just have to experience every painstaking small feat along the way.    

Strength: I'm not just talking about the added arm muscle I am gaining from carrying this boy around.  I am talking about adding strength to my soul.  In the beginning we were pretty shocked, and I know I cried a thousand tears.  With each passing day we became stronger in our core.  Instead of just sitting there waiting for death to claim our little boy, we acted.  We dealt with things we could see and let go of what we couldn't.  Our son doesn't have any muscle, ok then lets start physical therapy, then we added occupational therapy, developmental therapy, and speech therapy.  I learned baby massage, and continued to act.  Declan doesn't need a mom that can't handle hard things, he needs a mom that will fight for him.  I argue with the doctors, and medicaid, and make phone call after phone call to make sure he gets what he needs.  I'm not afraid to stand up for my son.  My son doesn't have the strength to fight for himself yet, so we will.

I'm sure I can go on and on about what SMA means to us, but I will just talk about one more, and it is the most important one.

Love:  Oh my goodness what a powerful word.  My heart just bursts thinking about how much we love this kid with SMA.  I truly believe these kids come down to teach us how to love bigger and better.  We are connected, mind, body, and soul.  When he hurts I hurt, when he is happy I am happy.  Declan and I have a bond, everyone who knows us, knows this.  He is my baby, and I am his mother.  The love just pours out of him.  I hope everyone gets to feel this way someday.  It is magical. 

Spinal Muscular Atrophy... yes it's a horrible, unforgiving disease, but I'm not going to talk about that side today.  Today is a day for hope, and joy, and to remember those that lost the battle, but left behind a lasting impression.  I am terrified of losing Declan, but I can only deal with the now.  Declan is healthy, growing, and laughing.  The end of September he will be going in for back surgery where they will be putting in a Veptr like rod into his back.  We are staying positive and are very interested on how this will effect Declan.  Our hope is he will be able to breath easier, eat more, and sleep without pain.  The doc said he would probably gain about four inches after the surgery.  I will try to keep you posted.

  

I want to say a huge thank you to our family and friends that put up with our crazy needs.  We know we don't get to see you all that much, but hopefully you understand we still love you guys and we are always willing to help where we can.  

Thanks for reading about Declan, and you can help spread the word about SMA by sharing.  If you feel like donating you can always go to:

https://www.fsma.org/yougiveback

Declan in his stander

August SMA Awareness Month

SMA Awareness 

One warm Saturday at dusk everyone supporting SMA lit a candle for those who lost the fight with SMA and for those who are still fighting.  It just happened to be the same day my sister got married!  She was gracious enough to be in our picture this year for the candle lighting.  

For those of you that have been living under a rock and not following my blog SMA means Spinal Muscular Atrophy, which is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.  

Some facts about SMA: 
      Did you know one in every 6,000 babies is born with Spinal Muscular Atrophy?
      Did you know that Spinal Muscular Atrophy (SMA) is the #1 genetic killer of children under the age of two? 
      SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity or gender.

Sadly, there is no treatment, and there is no cure. However, SMA was selected by NIH (National Institutes of Health) as the disease closest to treatment out of more than 600 neurological disorders. I'd encourage you all to donate to help find a treatment to SMA if you are able. 

SMARD

SMA with Respiratory Distress

SMARD is a life-threatening motor neuron disorder.  Symptoms of SMARD are commonly seen within the first six months of life. Because SMARD undermines voluntary muscle function, infants who inherited a defective gene from both parents may be unable to lift their heads or may have other mobility limitations. Their inability to breathe or cough makes them susceptible to pneumonia and other respiratory infections. Children with the disorder stop breathing due to a paralyzed diaphragm and often die in their sleep. As a result, many children with SMARD never see their first birthdays.

With SMA- roughly 1 in every 10,000 children are born with this disease.
With SMARD- roughly 1 in every 1,000,000 (if that) are born with this disease.

1 in 40 people are carriers of the SMA gene.
1 in 50,000 are carriers of the SMARD gene.

If you want to read more about SMA or SMARD you can click on the tabs at the top on this blog and they will share more info.

It has been 18 months and we still are not formally diagnosed.  Everything has come back negative.  SMA, SMA x-linked, SMARD he only has one mutation and your suppose to have two.  We have done deletion tests and we can't find anything wrong with the other gene.  Our DNA is rather long and I guess Declan's DNA just likes to hide things so it as been difficult.  So here we are dealing with a day by day basis.  Not fully knowing, but fighting through anyways.  Today we have him, today he is smiling and laughing.  

We recently received a demo wheelchair for Declan to learn on.  It's been less than a week and we got him to go straight.  Now we just have to work on other directions.  We are super excited to start this new adventure with Declan and we love to see his face light up.

Above he has only had the wheelchair for about 4 days, and was getting mad at us for turning him around and touching "his" chair. 

I also wanted to tell you that believe it or not this cute little boy still gets into trouble.  Just because he can't walk or do most things physically doesn't mean he gets off the hook.    He is coming up on his terrible two's and him being different doesn't stop what naturally comes with growing up.  I wanted to tell you the first time I yelled at him.  As most of you know I am always carrying Declan up on my shoulder.  It just so happens that Dec has a thing for biting whatever he can get into his mouth.  This day it was my neck he bit, now mind you it wasn't a little nibble it was a full blown snap the jaws of life bite.  In another words it hurt like the dickens.  So I set Declan away from me (who was smiling at the time) and yelled at him to stop biting me and that it hurt.  You would have thought I just ended this kids world.  He gave me the saddest look with the puffed out lip put his head down and started to cry.  It was so cute I couldn't stop laughing, but each time he looked at me I gave him a stern look and he would again put his head down and continue to cry.    

It's not that I want to yell at my child, but even he has to learn right and wrong.  Just because he does things differently doesn't mean he still doesn't push mom's buttons.  Yes even the handicapped get put in time out.    

I do have to say this kid is incredible, he goes through so much.  He works extremely hard at everything he does.  Declan is truly a blessing to us.  He has shown us so much, has changed us forever.  I can't imagine life any other way.  I've finally found something I'm good at.  I will take the exhaustion, the constant worrying, the unknown future for each smile and laugh I get from this baby boy each day.    We don't know how long we get to keep Declan in our lives, but it's hard to not look to the future and live life one day at a time.  In the meantime we take lots of pictures (to much annoyance of my facebook friends), and videos.  We hold him tight and give him lots of hugs and kisses.  I would recommend the hugs and kisses to any of your children it is good for the soul, for yours and your child's   Most importantly tell them you love them every day and night.  If we have learned one thing from this experience it is life is hard and sometimes short so don't regret not saying something that should come easily out of a parents mouth.    

Continue to check back from time to time for our updates!

We Sold!

   Well we had our house on the market for 9 days before we got an offer.  We used these guys:  discoverealty. Our agent was Travis.  They worked with us and has a free staging consultant come to your home to help you get it ready to show.  They took awesome pictures too.  They always kept me in the loop, and answered all my questions.  Thanks Travis and your team!
   We closed beginning of June, and I am really happy we did.  Don't get me wrong I miss my friends in the neighborhood, it was so much easier to barrow a cup a sugar when they were right next door, now... I have to go to the store!  You know that feeling you get when you have been away from home for a long time and you get this excitement in your belly.  When I go back to the neighborhood past "the old" house I don't get that.  I think by the end of it we were really really happy to leave.  I am sure it will be great for the new owners, since we fixed everything while we lived in it.  We had to repair so much in that house that by the end I think we really hated living there.   One chapter of our life is done, ready to open tons a news ones.

Mommy and Declan

Last days of cleaning just missing one thing...

Sunrise from the old house

These are the birds that lived in our hitch of the trailer,
 luckily for us they left before we had to.

While we are building we are renting.  In order to stay on the main floor for Declan (We started the process to get a wheelchair, I will post about that later)  we had to get a... 2 bedroom apartment..... to say it is a tight fit is an understatement.  Ok going from a 5 bedroom home to a 2 bedroom apartment is hard so this is what you gotta to do:
1) Declutter:  Those treadmills that are sitting in your garage... they are not there for decoration and since you probably don't know how to use them I suggest selling them.
2) Get A Storage Unit:  A 5X10 doesn't fit anything you need to find one of the biggest units where it will be easy to get in and out of.  Also stack boxes! Go up to the ceiling  or until your boxes start to look like the leaning tower of pisa.
3) Use every nook and cranny in your apartment:  Oh that's the master bedroom walk in closet you say?... Oh nope it now holds your babies changing table, and every miscellaneous box that you think you needed in your little place.  Oh they gave you a stackable washer and dryer?   Well look at that when you move that over it gives you a perfect place to put your freezer... what you can't shut the laundry door? Oh well deal with it!
4) Find places to go:  You may think to yourself "naw I can stay inside the apartment with 5 people, and tons of baby toys everywhere"  Yeah well you would be wrong.  See first you don't notice it but you start to go a little crazy, you get this far away look in your eye, and you start to contemplate the murdering of your older children... and you start to think "It might be worth going to jail".... SO to avoid this from happening find somewhere to go.  Go to the clubhouse and play at the pool or park or in our case splash pad.  Go for walks, even sitting on the porch out of the cramped space will help.  Read a good book, if your like me then you would be diving into my favorite author's books (That would be Sherrilyn Kenyon for you that don't know, there is nothing like a great romance!)  But I advise you not to kill your children, they might be the president some day. (the president of the nerds is probably more likely, but I didn't want to crush their dreams)
5) Alcohol:  enough said, AND or for those of you that don't drink the hard stuff a big glass of Dr. Pepper does wonders, it's what the doctor's ordered "wink wink"  (Since I am trying to look beautiful for my sister's wedding come August the only drinks I have been drinking is water :(  My hubby says I am pretty mean without my caffeine, and I have to agree with him...  I will have you again Dr. Pepper I promise!

Well those are the best suggestions I can give you.  Yes it will be a tight fit, yes you will get on each others nerves, yes you will be too broke or poor to go out all the time.  BUT think of what is to come.  Our future is  coming and we can't wait for it to start!

I want to say a very special Thank You to our friends (who know who you are H&N) for watching our babies (Mickey & Cooper) while we deal with these small dwellings.  We miss them, but we know your taking care of them.

Also to everyone who helped us move!  T that flatbed helped a lot!  Thank You Thank You!

Picture of the apartment below, yes I know it's messy, and no I don't care...
D&K are a sharing room, and Mom and Dad are also sharing one with Declan... fun times.
I do have to say the master bath here is bigger than the one we had... but everything else feels like it shrunk...

 



 



 

Sun bathing

Places we have gone:

 

 

The End

No more Quarantine!

Oh Sunshine!  I missed you!  We have been able to go outside, and to stores.  Ok so we haven't gone out too much.  Enough to get our house up for sale! We also picked a builder and hope to start construction in July.  So lucky us we will be renting for a bit, a little concerned about what we are going to do with the dogs for a few months, but we will figure it out.

We picked a rambler that hopefully work great for our family needs, and in an area that I like.  I will post pictures when the time comes, but it will be awhile.  What's that saying.. The longer the wait the bigger the reward?

Declan has been a trooper.  Since I have been dealing with showings of the house, I have been cleaning a lot and then I pack our babe up and leave the house for hours.  Messed up his nap times a little and I haven't been able to have a lot one on one time with him all day long like we normally do, but I think he is doing great.  I include him in my chores like making the bed I fold him up into the bed and he laughs and smiles back.  Laundry has gotten a little trickier he has gotten a little heavier and bigger I can't fit him to well in the basket with loads of clothes, but he likes to be with me.  Of course I haven't been able to keep up with our baby boy and the house so we have been working on independent play this month.  If we set him up in his highchair and prop up his elbows he can play on his tray with his toys.  He is able to exchange things between his hands too, still working on getting things to his mouth.

loved to sit in the cart, kept looking all around.

This May we are seeing the neuro doctors and hope to set something up with the spine specialist soon.  Poor boys back is getting worse, but he still loves to sit up.



D&K
    Big D is in an after school program called Mindstorm they build lego robots and program them to move.  He seems to like it and even though it makes him into a bigger nerd that's ok cause he is a big smarty pants!

    We got D&K in swimming lesson and they like it a lot, they never want to leave when the lesson is over.  I see a summer full of swimming pools and lots of sun.  It's a good thing we only have a month and a half left of school.

This next month is going to be full of packing and moving, oh joy...  May the weather be good, and mine and your families stays healthy.  We wish you well!

crazy hair!!