Ignorance is not bliss

Cora spent a great deal of today napping and then talking up a storm.  Its so great to hear that little voice chatting away while I clean the house.  She is already practicing her vocal skills and readying herself for "making her voice heard".

After  Cora rested and I was done cleaning the house, it was time to work on her sitting skills and tummy time on a pillow.  At this point this is the only therapy she can do until she gets clearance from her pediatric cardiologist.  I am looking forward to getting her working with Early On again with the hopes that she will gain some of the muscle strength back that she has lost over the past two months.

We are getting ready for that Marquette trip again to see her doctor.  I have mixed feelings because last time we went as soon as we got home she went into heart failure from the valve sutures letting go and tearing.  I am optimistic that it will not happen again.  I am praying that the echocardiogram will show no increase in the blood regurge and all will be well with Cora's heart.  I am not the master of this journey, creator is.

When I ran to the local store real quick, I was asked by a person at the gas station who had heard about Cora, "How are you going to handle raising her with the Downs?" ( Normally I am very open and willing to answer questions but this question was asked in a tone that reeked of prejudice and rudeness.) I took a deep breathe, said a quick prayer and  I replied that I would continue to do as I have been doing, raising her like my other children.  With lots of love and understanding.

I returned home and remembered a quote I had read last night before going to bed ...

★"The highest form of ignorance is when you reject something you don't know anything about." -Wayne Dyer ★
                   
   and I continue to  hope the knowledge that can be gained from Cora Jean's journey will enlighten people and help rid the world of the ignorance that can sometimes be encountered when trying to explain what Down syndrome really is and that Cora is a baby, just like other babies.

 tummy time exercise

 sitting exercise

 Cora finding her foot

                                 

8 months....yeah!

Cora successfully met her 8 month anniversary and marches on with gusto into the coming month.  She has fought for every day that she has been given and she just astounds me with her "can do" attitude. Here are some of her milestones for this month:

•  she can roll from front to back and back to front
• she has started to reach for objects while doing tummy time
• during tummy time she has started to draw her legs up to her booty and starting swimming with her arms and legs
• she scratches everything her hands come into contact with to hear the sound and feel the texture of what she touches
• she signs "milk" when hungry
• she says "mama"
• When you sing a song and stop the song and tell her its her turn to sing Cora will make a long drawn out verbal sound
• she is able to sit with little support on her hips
• she has started laughing more regularly
• she smiles in response to laughter and smiles
• she has stranger awareness and shows separation anxiety
• when you hold Cora close and pat her back she will pat you with her hand
• she continues to eat sweat potatoes, cereal, and mixed fruit from a spoon (with the adult feeding her)
• she absolutely...positively....does NOT like applesauce or anything with a strong apple flavor
• Cora also does NOT like grape tasting things
• she can lick a sucker
• Cora is able to communicate her likes and dislikes and discomfort
• when she hears a strange sound she will search for the source by moving her head and body in its direction
• she is starting to give kisses when kissed

I list these for a point of reference for Cora and to help others who have children with Down syndrome.  I also like to brag a little about Cora (just being honest here) and her accomplishments because she works so hard for each one of them.  Even though she is set back do to lack of energy and the heart problems, Cora is making up for it with all those little smiles. I don't have any expectation or follow a chart and push Cora to be anywhere particular in the milestones.  I just marvel at how much she accomplishes and the way she will stay focused on a toy until she figures out a way to touch it and reach it.  As long as she is thriving....charts don't mean a thing.  Cora is what matters most.

One of the things that we have to remember is that Cora is an individual before she is a "Downs Syndrome".  Every child develops differently.  When I am asked the question "How bad does she have Downs syndrome" I usually answer "I don't know.  Did you have your child IQ tested when they were 8 months old?"  I really try not to pigeon hole Cora with her Down syndrome or label her because pretty soon everyone would only see the Down syndrome and not the beautiful child that she is. 
So, we celebrate this journey with the milestones achieved and don't dwell on those milestones not yet found.

World Awareness

 

PRESS RELEASE - United Nations adopts resolution to designate 21 March as “World Down Syndrome Day” from 2012

This will ensure a major step forward towards our goal for WDSD to be observed and celebrated by persons with Down syndrome, their families and friends, those who live and work with them and all persons who wish to promote and ensure quality of life and human rights for all persons with Down syndrome.  

 

 

Wanted to pass on the great news!  Cora and I are thankful for the increased awareness...the more people that understand Down syndrome the better understood those with Down syndrome will be.  I hope this blog is serving that purpose and enlightening others about Down syndrome.  I also hope this blog is encouragement for other's who are on the same journey as Cora and I. 

 

 

 

 

 

 

Wonders of today

Yesterday found Cora and I cooking our late Thanksgiving family dinner. We opted for roast beef and stuffing rather than the traditional turkey dinner.  Thought this was required since we didn't have the standard Thanksgiving events. 

Today Cora and I spent the whole day resting and we didn't get out of our pajamas.  It was a wonderful day of down time for me (no appointments to race too) and a wonderful day of healing for Cora.  Her appetite is slowly coming back and she seems less in pain today.

The amount of medicine that she takes three times a day is sometimes overwhelming.  I read the list three or four times when I am measuring the medicines for fear that I won't remember the right dose.   I imagine it is because I am so tired and drained from the past two weeks.  Yet, second guessing myself is not something I usually do.

Cora looks good today, but one of her hands is swollen more than the other.  Kind of wondering about that, not worried though.  The body has a way of healing itself and ridding itself of the foreign toxins that come from surgery.  Maybe this is just Cora's way of healing.

When Cora was napping today I decided to look through a book of inspiring quotes.  I found one by Winston Churchill that seems to have stuck with me.  It said, "Never, never, never give up!"  The wonders of today come with the inspiration that Cora never gives up and she is teaching her mama how to achieve that same attitude. And she is teaching me with much grace and dignity.

Destination....Healing

Friday, November 25, 2011 & Saturday, November 26, 2001

Cora is doing well.  The doctors put her back on one of her original diuretics and it made all the difference in the world.  We went home with four medicines given three times a day....but we got to go  home.  That is the greatest gift I could have been given for this after Thanksgiving day.

With a final xray and the all clear and Cora peeing in her diapers like she has just gone in a swimming pool, we were sent on our way.  I gave hugs to all the wonderful nurses and Cora smiled at everyone we walked by in the hallway.

 diuretics finally working...waiting for discharge

It is such a mixed blessings when you leave the hospital because I have spent the last two weeks with other parents and shared stories and struggles with them.  We become instantly attached due to our commonalities and predicaments.  Giving hugs to some of the moms brought me to tears.  I was happy I was leaving with Cora in my arms and saddened that some of them wouldn't be leaving anytime soon. 

 dressed for the ride home

The ride home was hard for Cora.  Spending that much time strapped into her carseat is painful.  She did her best and didn't really start to complain until the last 30 minutes of our seven hour journey home.  (We were slowed by an accident on I-75).  That last 30 minutes saw me and her both crying ....her from pain and me from the inability to console her.  Once we arrived home though, I laid her in her playpen and she stretched and wiggled and smiled.  Then, sleep overcame her and she rested peacefully.  My dad, Kelsey, Phoenix and Melissa were all so happy to see her and they kept checking on her and just looking at her and marveling at how much better her coloring is since the surgery.

Yes, she is a marvelous gift and a wondrous work in progress. 

We still have many doctor visits to come in the next few weeks.  But for today, Cora's heart is doing its job despite the leaks and that is all I am concerned with.  Today is good.

I would say that for Cora Jean Head's first Thanksgiving she threw herself the best  party ever.  She got a fixed heart and more energy and she gets another day to thrive.  I am incredibly thankful for this and am so glad I was invited to the party.

 home at last and playing too much to stay still for the camera.

Thanks given

Cora is still in the general care and had a really hard day.   She was restless all night and by this morning she was not breathing right and just not being her usual self.  The smiles of yesterday were gone and in their place were frowns and restlessness .  The nurses and the Doctor also noticed the change in Cora and were concerned.  Off to x-ray Cora went to make sure there was not anything going on with her lungs.

Pain meds were given, and other meds were given and no change.  By 1pm the x-rays were back and they were clear.  The mystery continued as everyone tried to reason what was going on with Cora.  Her heart sounded good so they weren't panicking.  I, on the other hand, saw this behavior before in Cora and it has been during her times of heart failure. 

Brenda (high school chum who works here) stopped by to visit with us today and it was a special time as it took my mind off of worry and into relaxation and laughter.  It is always good to see friends that are supportive of Cora and who enjoy Cora's presence and love sharing this journey with Cora.

Later this afternoon it was noticed that Cora was not "peeing" the amount that she should be.  So diuretics were increased and since her blood pressure was still all over the board the Captiprol was also increased.  The idea that we were going home today was changed again to staying another night to monitor Cora.

By 6pm she had started "peeing" again and was acting more like herself.  Her breathing was getting better, but now her temperature is on the cool side. 

I never realized before how wonderful it is to have your child "pee" or "pooh" when you are in this situation.  We threw a little dance party in the hallway when Cora finally filled a diaper so much that it looked like she had gone swimming with her diaper on.  Yep, I was smiling and Cora was too.  Silly though we were, it was a great moment. 

We spend another night at Mott Children's Hospital, but truth be told, I am more comfortable staying than taking Cora with all this going on. I'd rather err on the side of caution.

This night will be a continual celebration of "pee" diapers and will be filled with thanks being given every time I have to change one.

Being Chosen

Started the day with an echo-cardiogram. This is standard procedure before discharging the patient after heart surgery. Cora fasted until 8am and then was sedated. She did very well until the ultrasound tech had to push pretty hard on the abdomen to get a under shot of Cora's heart. It was then that Cora came out of a heavy sedation and looked at the tech with an expression that said, “Excuse me, but I am really sore where my chest tubes used to be and that hurts.” The rest of the echo went well and Cora laid quiet enough for her to finish.

When the tech was done she got a paige from Dr. Bove and he wanted another view of Cora's heart. Then it was back to the room and waiting for the news. Cora's discharge meds were already picked up and we were packed and ready to go. After three hours without any news the nurses started to paige the floor doctors to see what was taking so long.

At 4pm the Doctor came in with the news form the echo-cardiogram. Its when he closed the door to the Cora's room that I new it wasn't the best news. While the repair has diminished Cora's regurge, there is already signs that the repair isn't healing quite like it was suppose too. The echo after surgery showed very mild regurge from the repair and equal pressure in the chambers. Today's echo showed “jets of regurge” between the sutures of the repair and an increase to moderate regurge and  unequal pressure in the sides of the heart.

I sat an listened to this man tell me that we are so fortunate to have been able to be able to get some more growth on Cora and more strength on her before, (or if) the repair again lets go and she needs a mechanical valve operation. I heard him tell me that the only option next time is the mechanical valve. I heard him tell me that with luck Cora won't need another operation. Then I heard him tell me that often times children with this kind of repair and these kinds of results do end up coming back for the mechanical valve replacement surgery.

I heard all this....but my heart wasn't listening. My daughter is now on Captiprol again to help with the pumping function of her heart. She will remain on this indefinitely and long term. Again my mind heard this, my mouth asked the right questions and my mind listened to the answers. My heart was crying and my soul was wounded. I wanted so badly to fix this for my daughter and I couldn't.

I unpacked her things and got her set up for staying in the hospital again because they wanted to monitor her for a day or two while she takes the first couple of doses of Captiprol. This medicine can sometimes cause a real drop in blood pressure and they monitor her to make sure she doesn't have this happen. Even though she was on this medicine before the surgery and she tolerated it well, they aren't taking any chances with Cora.

I stood next to her crib and just looked at her. Cora was smiling at me and wiggling her little body. While I watched her, smiled at her and held  back my tears I remembered a moment:

Shortly after getting testing during my pregnancy and having it confirmed that Cora would be born with Down syndrome I stopped in at the Pickford Medical Center to let everyone know about the news. Laurie, a nurse that was working there at the time, took me into one of the exam rooms to talk with me. This is what she said, “Katrina, I know you. You want to take blame for this, you want to own this, you feel responsible. There is nothing that you did or didn't do during this pregnancy to cause Cora to have Down syndrome. It just happens. And you know what else? I believe that God gives these children to mom's that can handle it. You can handle this and anything that comes your way with Cora. You have been chosen to be her parent because God knew you have what it takes to give Cora the kind of life she deserves. He chose you because he knew you would love her no matter what.” By the time she was done talking with me we were both crying.

So here I am , still in the hospital with Cora instead of heading home and I have a huge “aha” moment. As Cora smiles at me and looks at me with those blue eyes that are often filled with ageless wisdom I am filled with happiness and joy at finally understanding I was the chosen mama for this child. It brings me peace during this step of our journey.

Sunday best

Its Sunday and the perfect day for Cora to get to wear her Sunday best.....her smile. 

This morning was another big morning for the little button.  She was all smiles and playing happily despite the fact that she was on a fasting for the sedation the doctor's would use when they removed the chest tubes today.  After seeing me this morning she did start to fuss a little bit. When she didn't think I understood that she was hungry she got a little fussier and started saying my name making the sucking motion.   This made me emotional and filled my heart with such happiness....Cora has been so filled with medicines and tiredness the last few weeks that she had stopped telling me when she was hungry.  To see this again was all I needed to start that tear train rolling.

I opted to have a dose of oxycodine with the percocet for her conscious sedation this morning because of her having such adverse reaction to the morphine.  The Doctor's that were on call this morning have been with Cora the two previous visits and agreed with me that she is not a candidate for morphine.  I tell you, she was a trooper and I was so very proud of this baby girl....she didn't whimper at all through the removal of the chest tubes until they pulled the stitches tight.  Then it was one little yell that ended in a huge pout.  The Doctor's both laughed when they saw that pout and Cora joined in with a huge smile of her own.

Once this was done the nurse and I gave Cora her first after surgery bath and she was unhooked from all the monitors.

So now Cora lies in the crib, full of mischief and play, dressed in a little gown and totally unhooked from all monitors.  Her breathing is normal (45 -50) and her heart rate is great (129) and she is looking pink again.  Despite all the bruising and her still being sore, she is only on Motrin and Tylenol with the oxycodone only as needed. They are still giving her oral Lasix and Aldactone. The nurses  were suppose to move her out of moderate care and into a regular room today but there was not a bed for her. This didn't bother the nurses in moderate care as they are happy that Cora is staying in their ward because she lights up whenever they peek into her bed and say hi.

Cora continues to work her magic even when she isn't 100% herself.  For me, that's the best thing this Sunday had to offer.

Playing with Horsey before chest tubes removed.

Cora talking with Horsey in their secret language

Rainbows and faith

November 19

This makes day five for Cora's stay in the Mott Children's Hospital. Today was definitely a better day for her. She was able to get off her high flow and is on room air and loving the fact that she no longer has a tube stuck in her nose. They decided to just remove the tubing to stop the water that kept flying into her nose and making Cora panic. The respiratory therapist watched her and Cora was breathing well enough to leave the tubing off. Yeah, one more tube gone.

One of Cora's chest tubes was leaking and when she would breathe or cough it would pull air back and forth within the drainage in the tube. So unfortunately, the dressing had to be redone and the all the tape again removed and replaced. Cora's skin is not doing very well with all this and she is bleeding from places that haven't seen surgery, just the war of tape.

Despite all this, she is doing well today. Actually got a few smiles, several “oh-ma's” and some raspberries today.

The Doctors are looking at moving Cora out of moderate care and into a regular room tomorrow . Her chest tubes are suppose to be removed tomorrow as well. I am sure once this happens Cora will do even better in the pain management department. The new formula they put Cora on seems to be working well and the fatty drainage has decreased a great deal. She wouldn't eat it warmed up, but loves it cold and sucks it right down. Cora is nursing from the bottle again with no sweating or panting.

“”Those that believe the storm will pass will see the rainbow before others know the rain has stopped.”” These words kept echoing through my mind as I watched Cora today. By her presence in my life and watching her continue to be undaunted by yet another surgery and various setbacks, she has taught me that even in times of struggle we must believe and have faith. And most times this has to be done blindly and without worrying that the outcome will be what we want it to be. Because the actual outcome is usually better than anything we could have imagined.

No high flow anymore!

 sharing raspberries

A setback

Sorry  Cora and I didn't blog yesterday.  The past two days have been very eventful, and not in a great way.  Yesterday was spent rocking, holding, consoling and begging Cora to feel better and settle.  The took her off the morphine and she was tolerating the Oxycodone, Motrin and Tylenol pretty well.  But when it got to the half hour before a dose of pain medicine Cora would be highly agitated and twisting from side to side.  Completely understandable, yet so hard for me to watch.  As a mama I want to make everything okay for Cora and there was nothing I could do.  When she would look at me with those blue eyes and say her version of "mama" it would make me feel so helpless that I could do nothing to ease her discomfort accept hold her and tell her I loved her and kiss that little forehead of hers.

During all this we did have a fun visit from some of the University of Michigan athletes who volunteer their time to visit the children at the hospital.  These four students were wonderful to talk with and signed a baseball cap for Cora.  I have to give them a shout out on Cora's blog and commend them for volunteering their time.

Finally last night about 11pm she was totally wore out and fell asleep.  She slept through the night and was up at 7am this morning.  As the day progressed Cora's breathing became labored and she started using her chest to pull in her breath and her retractions were back.  At one point her heart was racing at 170 bpm and her breathing was at 67 - 88 bpm.  She had also spiked a fever. And Cora is allergic to the hospital blankets and sheets and started to develop a rash.

At this point I started to feel overwhelmed and emotional. Totally at a loss for my daughter.

This afternoon they were able to get her fever down, although she was still breathing labored.  So the fellow on the floor increased her high flow back up to 3 (it was being weaned to room air oxygen) to help Cora again with the breathing.  Her drainage has not slowed very much and she has started losing "kile" (sp?) with the other drainage.  This is losing fat from one of her lymph nodes and that means that the formula she is eating is putting the fat out of her chest tubes.  Lord, I hope I said that right for ya'll.

When I finally got her to sleep this evening her heart beat was doing well again and her breathing was slowed to 50 bpm.  We are using the two blankets that I brought with me for the trip to keep her off the hospital linens and her rash has stopped. What was going to be a short stay in the hospital is looking like a longer one.  But if this is what Cora needs, this is what Cora gets.

In all of this, Cora still finds the energy to smile at me and give me a raspberry.  Never thought I would be happy to see one of my kids spit at me...

 A rare moment of rest with Mama

 Emily taking her turn

 Finally a restful sleep

Accepting Intervention

Arrived this morning to find Cora still resting peacefully.  Yesterday was a hard day for her and much time was spent holding her hand and tapping her with the mallet to ease her breathing and get the mucus to come out of her lungs.  By three in the afternoon my dad and the other kids had traveled to see Cora and had given her all the kisses she could handle.  It was a long day for her.  Toward the evening Cora was terribly restless and acting like she was in pain.  Cora shows this by rolling from side to side and crying.  The nurse and I at first thought she was hungry because when we would wet her mouth with the sponge and sugar water she would suck it like it was the best tasting lollipop in the world.  After two hours of Cora being distressed she was given more morphine.  Last time they weaned Cora to quickly off the morphine and it resulted in the same behavior from Cora.  Once the pain meds were given Cora fell asleep and at one point was dreaming and even smiled a little.  It was so good to see that little smile.

This morning I was told that the doctors had rounded and were very happy with Cora's progress.  She is no longer on heart meds, only pain meds and they were going to move her to a moderate care room.  I left the unit to update the log and get some breakfast.  When I left they were removing one of the chest tubes (two still remain due to continued bleeding and drainage) and the Foley catheter was also being removed.  Around noon Cora will get to eat some formula by mouth in the hope that she will keep it down and will be able to keep feeding.

Despite the fact that Cora has had to endure two major open heart operations in the past two months, I have learned that there is God's hand working in all aspects of Cora's life.  Without having another bout of heart failure and needing this second operation, the posterior hole in her heart would have not been found.  Without that hole being found Cora would have again, at some point, possibly been suffering from heart failure.  Dr Bove said he was so glad he had found the hole that wasn't showing up on the Echo's and that the little hole had played a part in all of this was able to be repaired.  I ask you this.....is it a coincidence that Dr. Bove found a hole that was not visible in Cora's smaller heart at a younger age or divine intervention?

I have learned to accept many things during this journey.  It is easier to look back at the past two months and see how things have been going down a path that has been of a divine choosing.  Cora has been traveling this path with acceptance and no judgements.  I am learning how to do this.  I am learning to look for the divine intervention and remain in the optimistic outlook.  I am finding that my faith and acceptance is increasing and growing while I travel this journey.  I am eternally grateful that my hand holds one with a "Palmar's crease" during this walk.

Nov. 15, 2011 / Cora in PCTU

Nov. 15, 2011 / GG and Cora Jean

S - Day

This morning had us up at 5am and checking in at 6am for Cora's surgery.  Despite the fact that she hadn't eaten since 10pm last night, she was her usual happy and smiley self.  Until the anethesiologist took her from me to carry her to surgery.  At that point she grasp her little hands tightly together and tried to curl herself in a ball, squeezed her eyes shut and started to cry.  It absolutely tore me apart.  It was amazingly difficult to walk away, the only comfort was knowing that she was in great hands.  Then it was to the fifth floor and the waiting room outside the PCTU/POD A area.

9:42 am- the floor nurse came out and told me that Cora was on bypass and Dr. Bove was preparing to open the heart for surgery.  I said a huge prayer.

10:30am - the floor nurse came and told me the surgery was done and that Dr. Bove would be out to talk with me.  She told me they were able to repair the damage without a mechanical valve.  I praised creator.

11:15 am - Dr Bove came and talked to me about the surgery.  He was able to repair the valve and even sutured it slightly different.  While he was repairing the valve he found a posterior hole and repaired this as well.  He did not see the hole in the initial surgery.  He was definitely able to tell where the sutures had let go.  He is very optimistic and said the prognosis looks really good.  I hugged the internationally renowned Dr. Bove.

12:45 pm - I finally got to see my little button.  She looked good and her hands and feet were once again warm to the touch and pink.  Instead of one chest tube, she has three this time.  It was explained to me that there is usually more bleeding with a second surgery because of all the scar tissue.  Cora was having a difficult time with her blood pressure.  She was given some blood and also hydrated with a bolus of liquid.  This seemed to help, but she was restless.  So they increased the morphine and it helped her to relax.  Although on the ventilator, it was nice to see Cora breathing at a slower rate, rather then her 60 - 70 panting breaths in a minute.  She looks so destressed even after such an invasive surgery.

The rest of the afternoon was spent peeking in on her and softly touching her hand and marveling at the miracle of our modern science.  Being that Cora has Down syndrome some of the medicines work different with her.  They had to get the restraints again because the little bugger was trying to grab her pacer wires, IV lines and various other things within reach of her little fingers.  The night nurse gave her a dose of a different sedative and Cora finally gave up and is resting peacefully.

So after a kiss goodnight and a promise to visit her in a few hours I left my little button in the very capable hands of the PTCU nurse with the promise to keep my cell phone right next to me and her promise to call me if there is the least little change.

Cora has done well for the first 12 hours after surgery.  As far as S-Days go, this has been a "sensational surgery" day.

The waiting game

Well testing is done and the last two days have been spent just hugging and cuddling with Cora. The testing on Friday went as planned and Cora endured it like the trooper she has been all along. She started the fasting at 6am and we were in x ray by 9am. I dreaded the pig-o-stat more than she did. Cora was strapped into it with her arms in the air, the plastic strap under her chin and her legs hanging, and smiled the whole time. I am continually amazed and awed by the open love and happiness this daughter shows to those around her. Once that was done she was given the sedation for the echo-cardiogram and the EKG. This time the sedation hit her pretty hard. I don't know if it because she is weaker now than she has been in the past, but she was groggy and floppy all day long. After that testing was done one of the Cardiologist from the team that will be operating on her came and talked with me about what to expect.

The whole team is pretty optimistic about Dr. Bove being able to do the repair. Although they did again talk to me about the artificial valve being a possibility. I am praying this is not the choice that is presented to Dr. Bove when he does the surgery, for if he has to do a mechanical valve that means several operations in the future for Cora. During the Echo they found the valve had prolapsed and there was a cleft of some kind. That's all I could gather from the discussion and really that's all I wanted to hear.

I again say that if Cora has to be anywhere I am very glad it is here at this hospital. The University of Michigan Medical Center is one of the largest concentrations of medical education, research and treatment facilities in the world. Located on 82 acres this 30 building complex includes a premier medical school and world-renowned, advanced patient care facilities. The Med-Inn is located within the walls of the facility and makes it very easy to see Cora and be within pager reach if I am needed.

Tomorrow fast approaches and I find the anxiety grows as the hours of today slip away. I watch Cora sleep and I silently pray for the patience, the understanding and the faith that I will need in the early morning hours tomorrow. Just like Cora, I truly need to take one moment at a time tomorrow morning and have faith that whatever happens it is for Cora's greater purpose and not necessarily for my understanding.

We've arrived

November 10, 2011
The six hour drive to Ann Arbor was made during alternating sunshine, snow, rain, sleet, hail and high winds.  We arrived safe and in time to check in for our reserved room.  Cora was so happy to be out of that car seat and able to roll around on the bed and stretch her legs.  She settled right in and was ready for tickling and playing.  My three travel companions, my daughter Emily (17), Cora and my mom, were a little giddy after the road trip, so they were more than happy to play  while I unpacked Cora's playpen and toys.

 < three silly travelers

 < the almost serious 'we've arrived' photo

It is a relief and a sad reality that I knew where to park, where to go, the shortcuts and the how to's of the way things work and what I needed to do for Cora's workup tomorrow morning. It was definitely a mixed feeling of joy that I and Cora were recognized by many of the people here and a feeling of sadness that we were recognized.  Cora was greeted with a great deal of smiles and the kind of well wishes that usually started with , "Oh, Cora.  You're back.  You look so happy but I wish we didn't have to see you again."  A greeting that I totally agreed with.

< room view

So, despite the fact that we are here again for another major surgery for Cora Jean, I wouldn't pick another place to be with her.  There is a sense of relief for me because I know that if Cora has another sudden medical crisis I am in the perfect place for it to happen.  At home there is always the worry that she will take a bad turn and I will again have to rush her here.  Strange how I recognize a sense of relief during a stressful time. 

So it seems only natural that I end today's blog with another milestone for Cora that takes place in the Children's hospital that she has spent so much of her first seven months of life in.....She was able to hold her bottle by herself for a feeding.(first time for her to accomplish this)  Go Cora Jean, Go Cora Jean, yeah Cora Jean!

Unexpected Gifts

Whenever I sit here typing this blog I see the little stack of the medical bills that need to be paid.  I have been so worried about these bills that are starting to come in , as well as other normal household bills, that I haven't been sleeping very well. I am definately concerned with getting enough funds together to take Cora to Ann Arbor again while still meeting my other obligations. It has gotten to the point where I sing Cora to sleep and in the song I make up silly words about the angels coming and paying our bills.  Then this happened:

One of the local Down syndrome associations found out about Cora's upcoming surgery.  This is the group that helped me so much before Cora was born and sent me tons of information about Down syndrome.  After forwarding the information for Cora's blog, I received an email from them and they informed me that they were sending a monetary gift to help during the upcoming surgery. 

It was such a tremendous relief to hear this news.  Anyone who is a single parent knows the struggle that we face on a daily basis to support our children in the ways they need it.  Emotionally, spiritually, financially, etc. Let me just clarify that being a single parent with Cora is not a burden for I enjoy her presence and the other kids enjoy their sister.  Yet, it is a tremendous financial strain becuase of all of Cora's medical needs.  I am not one to tell people about the stress I am facing or the financial burden I am under because I just feel like it is my responsibility and not anyone elses, and truthfully noone wants to hear about that.

Then I receive the email that this group was sending me a monetary gift to help with Cora's surgery and my stay during that time at Ann Arbor.  To receive this gift, so freely given, brought tears to my eyes. A gift given with understanding and nothing expected in return. A kind of gift that touches the heart as much as it eases the financial strain.  A coincidence?  Nope, I believe it was divine intervention.

The first secret

I watch Cora playing in her playpen and I am amazed at how far she has come.  I see the NG tube in her nose and watch her try to pull it out again, despite the fact that I have been taught by her how I need to tape it to keep her from doing this. I see her grab different toys and rattle them and try to get them to her mouth.  I watch and listen as she talks her baby garble words and see how successful she has become at moving her tongue to make different sounds.

To Cora, life is an opportunity.  She doesn't care that she has to nap every few minutes because she has so little energy.  She doesn't mind that her heart isn't beating or working like it is suppose too. She has the trust that when she reaches her hand alongside her body that hand will find a toy to play with.  She knows where I am and searches for me.  When she finds me she smiles and laughs, because she knew I would be there.

I watch her and I am reminded of that line by the writer Robert Frost were he says, "I always entertain great hopes".  Cora is like this in so many ways.  People are always commenting on how   quiet and happy she seems.  I agree.  Cora has the ability to be so peaceful, and many times lately when I hold her in my arms and cry at the injustice of our life and events right now, she will look at me as if she carries the wisdom of centuries and hold my gaze.  Those little blue eyes seem to be telling me so much and, despite this sounding strange to some, as she holds my stare and gazes into my eyes, I would swear I can hear her speaking to my soul. 

This little child is such a blessing.  She has a mind that is open to everything and attached to nothing.  She knows the first secret in wisdom, without having to be taught what that is. What an absolute gift in today's world. 

Like a willow tree

I have learned during this experience with Cora that I have become a willow tree.  Not another kind of tree, for an Oak tree is very strong, but it is not flexible.  If a strong wind comes up the Oak tree fights against it. If a terrible storm comes upon it with a great amount of wind, the Oak tree will likely break instead of bend. 

Me, I am like a willow tree.  I am like Cora.  She just goes with the flow.  She smiles even when she is at her sickest.  She wiggles and flexes even when the nurses or doctors are having to cause her pain to make her better.  She cries against the injustice of it, and when the test or the medicine is over, she smiles and wiggles her toes.  Cora is happy to be here and is present in the moment.  Cora adjusts to the situation and bends freely.

Cora is teaching me how to be that willow tree.  That no matter what comes next, no matter what the weather is like on any given day of our journey, I must be that willow tree that bends and sways and curves and moves with the flow of the storm.  If I am like an Oak tree it is likely that I could break under the pressure of the storm or the suddenness of a turn of events on our journey.  Yet, if I am and if I become a willow tree, I will weather the storm, I will bend and flex with the next treatment or surgery that Cora needs, and I will survive the storm.  Maybe without a few leaves, but intact and smiling.

For I have learned a great lesson from my daughter.  If I am flexible I will bend with changes that might come our way.  If I am not flexible, I will break.  So, yes, I am a willow tree.....just like Cora Jean.

Throw out the bath water...not the baby

My grandma used to say this.  I remember her saying this when all the grown-ups would be gathered around the table for holiday dinners or for Sunday lunch.  Someone would be talking about a problem and this was a gentle reminder to get that person looking differently at the problem without letting it consume one's life.

I thought of this today when I was driving home from another appointment with Cora.  We had been to Marquette yesterday and today we drove to St. Ignace.  Both for doctor appointments that are centered around keeping Cora at her best with the way her heart is working right now. She hasn't grown any in the last month and she hasn't gained any weight.  The good thing about this is that she hasn't lost any weight either.  Cora has a little fat roll by her arms and Doc Statler called this her fat reserve.  Both Doc's were optimistic with the upcoming surgery. 

I, on the other hand, am fearful and anxious about Cora's health and her ability to tolerate another completely invasive surgery such a short time after her first one.

So, on the way home this afternoon, my mind was wandering to the "what if" side of things.  Never a great place to let the mind wander.  Then it wandered into the "don't know if I can do this" thoughts.  Then it wandered into the "there is no extra funds anywhere" kind of thinking. At one point it was dwelling on "am I giving all the kids the time they need".  Then my mind started doing the whole snowball effect, where one negative thought was leading to another, and another, and another......

At that point I very clearly heard my GranGran's voice say, "Katrina, don't throw the baby out with the bathwater.  Take one day at a time."  Good advice for me during this stressful time.  I looked out of the windshield of my Yukon and said a quick thank you to the heaven's.  I am sure GranGran was up there smiling at me and Cora.

 Cora after a bath-exploring the quilt pattern on my bed

Cora showing off her spikey after bath hair

First Halloween

Well Cora endured being dressed in a duck costume with beauty and grace.  I took her trick or treating with my son Phoenix, daughters Kelsey and Melissa.  Poor Emily was sick so she could not join in the fun. 

I wrapped Cora up in her blanket and put her in the stroller and we followed along with the older kids and toured the great town of Pickford.  Everywhere we went Cora was greeted with smiles and well wishes.  It was an amazing night and Cora was the cutest button around.

For Cora's  first Halloween it was a blessing and a treat to share it with all my children.  It was an honor to watch the other kids interact with Cora and see their pride in their little baby sister.  Not a single moment did I see them shy away from other friends  or try to hide the fact that Cora was their little sister.  I must be doing something right in raising this family.  I am so blessed to see the way Cora is teaching her older siblings to be even more accepting and open minded.

Cora in her duck costume (Emily is under the table with her hands behind Cora to help support Cora so she can sit for this cute photo)

Cora after doing a raspberry

Behind the scene helpers for Cora's "photo op"...(Melissa in Spartan hat, Emily in Blue shirt)

 Cora after her first Halloween.