Day 30, Off to the Beach

I have been unable to update for the last few days,  here is a quick synopsis.  Thursday, Lindsey had a couple of  IV infusions. One was a drug called cytogam.  All new transplant kids get this once a month after transplant for the first year.  They usually schedule it with biopsies.  The other infusion she received was the IVIG.  This is for cleaning out the antibodies. She will receive this until her labs show no antibodies.  Sierra has been getting this monthly since August.  Hers has not been helping her antibodies go away, thus why she is doing plasma phoresis.  The IVIG is a 12 hour infusion and the Cytogam is 3-4 hours.  This makes for a very long day in the short stay unit.  We started at 11:00am Thursdays and finished at 4:30am Friday morning. As for the rest of the crew, I have to thank Michelle who took care of all the kids.  She picked them up from school, fed them and brought them back to RMH where she stayed with them until we got home at 4:30am. I don't know what we would do without her.

Lindsey and I came home and slept for a few more hours.  The older kids did not have school due to a teacher development day.  So, we let Hunter skip school and we all went to the beach for the first time in 9 months.  It was soooo nice!!  Lindsey just loved running back and forth trying to avoid the water.  She was in heaven.  It was so fun to see her laugh and play in the water.  The last time we went to the beach was with Angel, Ben and Ava back in June.  Back then she went in the water a few times, then just sat on the beach watching the rest of us.  It wore her out and she slept all the way home.  Yesterday she went strong and even had the energy to boss all of her siblings on the way home.  So good to have her back!!

We returned home for an appointment that she had at 3.  We were lucky enough to have Jessica and Tanner Hayhurst drop by on their way through for a basketball tournament.  The last time we saw Tanner, he was with his dad and they came by a few hours after Lindsey came out from her Berlin surgery and we were running Gage down to the ER in complete heart block.  Needless to say, he thought Lindsey looked totally different from when he saw her last.  It was so good to see them!  Thank you Jessica for going out of your way to visit, even if it was quick.  It was really nice to see you.

Lindsey still has daily dressing changes done on her ole' Berlin sites.  This involves putting some packing into the wound and covering it with gauze.  It is looking better and better every day, but she really hates the packing being placed in the wound.  It is pretty painful, however, we are getting to the point where packing just won't fit into the wound on the left side. While at the beach we had to be very careful, because we do not want those sites getting wet. Hopefully in a couple more weeks they will be completely healed and we can go swimming.  When they are healed she she will have 2 new belly buttons to show off.

We ended the night with a movie night and some pizza brought over by some friends.  It was a very enjoyable day.  Now, it is off to go pick up Jason from the airport.  He comes back this morning and we are going to get a speech ready for tonight.  Tonight is one of the RMH's biggest fund raisers.  It is a pretty fancy production called "Denim to Diamonds."  They have asked if our family will come and be spokesman for the RMH again.  This will not be as big of a crowd as the HP Pavillion, but it will be a large crowd and this time we are taking the whole family.  Dinner is at 8:00 pm and and speaking at 9:30 tonight.  Hopefully we don't have a lot of tired and grumpy kids showing their unhappy side at this time.  We are so happy to do this for the RMH who have done so much for us. 

Half Moon Bay

 Sweet belly buttons!!

Lindsey is slowly getting her appetite back! Loves anything with chips.

 

Hunter was the first to sit in the wet sand.

 

The results of sitting on wet sand.

 

 Gage fell in the water and was all wet.  Megan let him have her sweatshirt.  He broke it into being in the sand really well.